The Palsy Podcast - Episode 30 - Jade Owen

Ciaran is joined on the penultimate episode of The Palsy Podcast by Jade Owen. Jade talks about her experiences growing up with Cerebral Palsy, and having surgeries as a child. Jade and Ciaran discuss disability advocacy and what can be done to curb the recent rise in disability hate crime. 

Jade's SDR GoFundMe Page

Transcript

SPEAKER_02 0:01

Hello and welcome to the Palsy Podcast with me here in the show. I'm a playwright, screenwriter, and podcaster from South Wales. And seeing as March is Silver Palsy Awareness Month to Market, I've decided to interview interesting people who have Silver Palsy from Wales and beyond every day in March. If you like this episode, please stay tuned for Walsh throughout the month and like and share. Now enjoy this episode of the Palsy Podcast. Hello and welcome to episode 30 of the Palsy Podcast with me, Kieran Fitzgerald. If you don't know by now, where have you been for the last month? But March is Silver Palsy Awareness Month, and this month I'm interviewing some really cool people who have CP. And this is actually the last interview I'm doing. You might think, oh Key, there's 31 days in March. What are you gonna do for tomorrow then? Well you'll have to tune in tomorrow and find out because Jade Owen is the last person I'm interviewing, but she will not be the last episode of this podcast. So tune in tomorrow to find out what the last episode is and what my future plans are with this. But for today, I'm delighted to welcome Jade Owen to the Poli podcast. Hi Jade, how are you doing?

SPEAKER_00 1:45

Hi, I'm good. How are you?

SPEAKER_02 1:47

Really good, thank you for doing this, and thank you for giving up your Sunday morning.

SPEAKER_00 1:51

Thank you, and thank you so much for having me.

SPEAKER_01 2:00

Mm-hmm.

SPEAKER_02 2:00

Like, what was it like growing up with CP in childhood? And was there a moment where you first realized that you were different?

SPEAKER_00 2:10

Um, so for me personally, because I know everyone has their own experiences, but for me growing up with Sarah Pause, I did feel very different very early on. Um, obviously, I think it's because I had a lot of friends who were quite sporty and enjoyed skipping and running.

SPEAKER_01 2:24

Yeah.

SPEAKER_00 2:25

And that was my kind of like social connections growing up. I had friends who loved that kind of stuff, and I remember going home to my mum once and being like, Mum, why am I so different? Why can't I do that? Like, why do I struggle with these things? My mum just went, Well, we're all a little bit different, we all can't do everything.

SPEAKER_02 2:42

Which is true. But did you wish, like, did you want to did you ever have an explanation of why? And and when you did, did that make things a little bit easier?

SPEAKER_00 2:54

Well, obviously, I was diagnosed with thyropausy at the age of two, but they didn't really know what type I had until it was actually on my sixth birthday that I got my full diagnosis of CP. So, yeah, it wasn't.

SPEAKER_02 3:07

It was quite late.

SPEAKER_00 3:09

It was quite late. They said when I was born that they suspect I have serapusy because of my mum had eclampsia and um I came two months early. So they suspected from that birth because I was in a coma my mum was in a coma and I was in intensive care that they suspected I may have serapusy growing up, but they weren't entirely sure, they couldn't predict. But one of the GPs said that I had a bleed on the brain, which indicates cerebral pausy. So they were just like the expectations were a bit like we're not sure. So obviously, I had my diagnosis on my sixth birthday, like my full diagnosis, and I was just like, oh, this makes sense to why I can't do stuff.

SPEAKER_02 3:42

And and obviously, like early intervention and stuff like that is really important for CP. And because you didn't have that diagnosis, did that affect your access to stuff like physical and occupational therapy, speech and language therapy?

SPEAKER_00 3:59

Well, I had speech and language therapy because I wasn't really talking much as a child anyway, but then they got got me a diagnosis for autism, which was like, yay, I got that one first. That was like that's really different. Like, okay.

SPEAKER_02 4:12

So like that is strange to me because so many people say it's so difficult to get an autism diagnosis. Yes, comparatively CP. It's a brain injury, you know, you can't really argue with that. So it's strange to me how the autism diagnosis. You know, about before the CP diagnosis.

SPEAKER_00 4:35

Yeah, I know, crazy. It was absolutely crazy. Like I obviously saw a lot of specialists growing up. I had occupational therapy, speaker language therapy, and then physical physical therapy. But they first diagnosed me properly was interpathic toe walker, and they believed that because I had the autism diagnosis, that I had a habit of going on my tiptoes because I did walk as a child, but it was I always fell over. So I think my mum took me to the hospital. The doctors once and said, Look, we need answers for Jade because she's not meeting the milestone, she's falling over constantly, like there's something wrong. And because my nan had MS, my mum thought because that can be in her registry, she thought maybe I had like that. Um, so obviously, yeah. So that was a long wait, and it was a very long wait and waiting list. But the physios there even knew there was something neurological going on with me. They um but the hospital was such a long backlogged waiting list, and they actually lost my file. So, like two years down the line, I was waiting for seeing a doctor. I waited two and a half years just to get a diagnosis, and when I finally got that diagnosis, they just went to my mum. Do you realize your daughter's got cerebral palsy? My mum was just there, like, no, I did not. And like and they handed her like a leaflet and was like, on your way.

SPEAKER_02 5:45

And that was it. That was it.

SPEAKER_00 5:47

That was it. I had f therapy, like physium, um, which was alright. I didn't like it. I don't think any child with CP likes physium, like ugh, brutal. I had a lot of like casts, like lag casts and splints, and you know, with all the authortics and made me feel almost like an alien on times. I was like, ugh.

SPEAKER_02 6:04

It might be it might be worth mentioning at this point. If you don't mind sharing how your CP affects you, because yeah, everyone is affected differently. So of course, yes.

SPEAKER_00 6:18

Yeah. Well, my CP like affects my walking. I can't really walk. Um, I actually sadly lost the ability to walk when I was 11, so I could walk on my tiptoes. It affects my coordination as well a little bit, and it mainly affects my even though I'm diaplegic, so I've got spastic diaplegic cerebusy, it mainly affects my legs, but it also affects my right side, which is like very confusing. Because I'm saying, like, oh, I'm diaplegic cerebusy, and then everyone's like, but your right, you know, your right hand's affected, and it's like, yeah, I know, it's just that one side.

SPEAKER_02 6:48

So it's like diplegia and hemorrhagic combined.

SPEAKER_00 6:52

Almost, yeah, but obviously it's very slight, it's minimal, like it's only a tiny amount, it's very unnoticeable.

SPEAKER_02 6:58

And like in in terms of like school and starting school, what what was your experience of school like?

SPEAKER_00 7:07

Uh I kind of wish I had that really good positive like experience with school, but um obviously I think early on um I did get a bit teased, but I didn't really take it as like teasing. I just thought, oh, they want to be my friends, and I thought everyone wanted to be my friends, but it got worse, the bullying more in comp, as you know, when you go to high school and everything, and that's where like this yeah, the bullying started more worse with people online, and I think everyone started to have their own like Facebook accounts and social media, and that's when everyone has an opinion.

SPEAKER_02 7:38

That has been a really common thing with people on this podcast of like really enjoying primary school and having a good experience of primary school, but then going to comp and experiencing bullying. Um like what were you good at in school? What did you enjoy?

SPEAKER_00 7:57

Um, I really enjoyed music and I liked English as well. I really enjoyed English, and like especially in comp, I did love PSE, which was like a little English like lesson that you learn about different things. Yeah, I really, really loved that. I loved showing my opinion.

SPEAKER_02 8:13

Like we were talking about politics the other day, and I from the conversations we you've had just over messages, like I reckon you could have a career in politics.

SPEAKER_00 8:24

Oh my gosh, in politics.

SPEAKER_02 8:27

But like, yeah, did you have a good circle of friends in school? Were you well supported?

SPEAKER_00 8:35

Um, in school, not so much. I wish I kind of did because I'd expect because I in when my first year when I first started, it was okay. I had small little groups of friends, but as I um I left school because obviously I ended up in a wheelchair and whatnot and and everything, and I needed to find a school that was more accessible for me. And then obviously I had to go down a year because it took like a year and a half then to get me into a school by the time I was in year nine by the time I was supposed to start school, so I ended up going down to year eight, which was a year below me. Yes, I was a bit there, like, oh my gosh, there's so much. But I decided to do that because year nine I felt like it was I wanted to have GCSEs, I wanted to fry them, I wanted to like things. I was like, right, I need to go to year eight to learn everything that year eight are doing, so then I can like catch up type thing. Um, but that was the worst mistake I ever made in my life. Oh, but what why because um so the lot because obviously there's a lot of younger kids and everyone's an adultish in comp, but obviously that's where the whole whole bullying started, where everyone didn't want to be my friend. They thought they could catch my CP if they were friends with me. They were very uneducated.

SPEAKER_02 9:42

That's so bad. Well, did you feel that you missed out on a lot academically because of the time that you missed in terms of school?

SPEAKER_00 9:52

Oh, yes, definitely. Like it affected my confidence. It got to the stage where I didn't want to go to school, so then they started to do like I would be in in the mornings and then I'd be home in the afternoons, and then it would be then they'd change it on the timetable, so then I'd be in in the afternoons, home and like and then home in the evening, like type of thing. And I'm just they're like, I don't want to do this, like I can't. But they had to gradually put me back in, and then in the end, I was just like, when I did full time, I was like, I can't do this anymore. Like it's so overwhelming and draining that I was just like it's impacting my mental health really badly, and my family are really supportive, so they were just like, do whatever you want to do.

SPEAKER_02 10:24

And do you feel like there weren't provisions put in place to make school accessible?

SPEAKER_00 10:32

Um, they they in the end had to put ramps down because in the canteen that um we had they had like four steps to enter the canteen. So I'm sitting there going, Can my support we could get my lunch room, please? So in the end, they did put ramps down, and it's like a really massive, like long ramp, so you can access now, which is great. And to get into the classrooms is like a high step, and to get into that high step, I had to have like a ramp. So I felt like they were kind of pulling the red carpet out.

SPEAKER_02 10:58

Yeah, a little bit more.

SPEAKER_00 11:01

I didn't feel safe in it in my electric chair. I was like, Am I gonna fall off this?

SPEAKER_02 11:06

Like one of those really wobbly ramps. It was like last any minute. Like, did you have TAs in school? Did you have one-to-one support?

SPEAKER_00 11:16

Yes, yeah, I had one-to-one support in comm. Um, I had one really lovely one, but then she wanted to change roles and jobs, so I was really like, No, don't leave me. And then I had somebody else who just didn't understand disability at all. Like, she was very much like, um, oh, you you can't do this, you know, and put in like expectations on me and like treating me as if I was a child, but then would refuse to take my books out of my bag, and I'm just like, Well, I can't really get my books out of my bag.

SPEAKER_02 11:44

Like that that's such an important thing in school is having a good relationship with your TA, and I had some good ones, I had some bad ones. Make a difference, like, with with how how you think. I I went to a Welsh medium primary school. Well and my TA in primary school couldn't speak Welsh, so I had to translate everything to as like a six or seven year old.

SPEAKER_00 12:09

That's so cool. You're gonna have to teach me some Welsh.

SPEAKER_02 12:12

Definitely. We will have that. Uh um So, like after school, did you have a sense of what you wanted to do? Were like career opportunities open to you? Was that something you were looking at? And has it been difficult in terms of employment or making stuff like that accessible?

SPEAKER_00 12:35

I think employment is a huge thing when you're disabled. It's really hard to get because they see the disability rather than the person, they see the limitations that we have, and it's a sad thing, really, the amount of jobs that I have tried to apply for, and it's been no, no, we can't employ you. But my main goal was to like talk about what the experience I had I had with school because I wanted that to be changed. I remember thinking, like, okay, even though it's such a negative thing that I went through, I could turn it into something positive to make sure nobody else goes through what I did, because I wouldn't want someone to have to leave school halfway through their GCSEs and then come with no qualifications and just be stuck in a world that it's like, oh, is this really meant for me?

SPEAKER_02 13:11

Like, and then I suppose, like, because through no fault of your own, through having no qualifications, the the ability to then go on to college was Yes, yeah.

SPEAKER_00 13:23

I did go into part-time music course in college because they were a bit like because I didn't have any qualifications. Some of the courses you had to have qualifications with. Yeah, I did say, like, I'll do English at Matthew C, like, I'm happy to do that. But obviously, because I needed support, it was a bit like, Oh, um, we'll give you this course, and they asked you what I was interested in, and I said music, I love music and drama. So I did a music part-time course in the evenings, which I absolutely loved.

SPEAKER_02 13:47

Do you play any instruments?

SPEAKER_00 13:50

I used to play the piano, but um, I've kind of forgotten now. I tried the guitar and I was just like, no, this is too much chords, like because you have to hold one hand and play with the other.

SPEAKER_02 13:59

I was like, how did you find that in terms of coordination and does your CP affect the way your hands move and stuff like that?

SPEAKER_00 14:07

Sometimes, but not all the time. Like it is mainly my legs that you know affect me, but yeah, sometimes it does. If I'm on like a really tired day, my hands are like, I'm not cooperating. Like if I'm trying to open a package, I'm like, I can't open this.

SPEAKER_02 14:21

And like in terms of employment and education, especially higher education, college and university, do you think there's more that schools and maybe businesses can do to help disabled people into employment?

SPEAKER_00 14:36

I reckon they should definitely listen to like disabled people and listen to our voices and just like include us and accept us. And obviously, things like what you're doing is a great example for that, you know, with this Aussie podcast. Like, I think that's absolutely amazing. They could listen to these podcasts and actually, you know, take on board what we're saying.

SPEAKER_02 14:54

Well, that's the plan. Sometimes, Shade, you feel like you're knocking on doors and saying this stuff, and all people really listening.

SPEAKER_00 15:02

Yeah, that's what it literally feels like, doesn't it? It just feels like we don't have a voice half the time because we're trying to voice our opinions and talk, but it's almost like, oh, it doesn't matter, we know better.

SPEAKER_02 15:13

And and there can often be that assumption of, oh, we know what disabled people need without actually talking to the individual person. Uh-huh. And the assumption of what that need looks like. Mm-hmm. Yeah, I agree. Every person is an individual, and you're gonna have different access requirements to me, we're gonna experience the world differently. I think progress comes from opening up that discussion and talking to disabled people on an individual basis.

SPEAKER_00 15:44

Uh-huh. Yep, I agree.

SPEAKER_02 15:49

I I don't know, it's been a really positive episode so far, but I wanted to talk about disability hate crime. Which hasn't really come up on the podcast so far, but it's an important topic that I wanna discuss. Um, if you're comfortable, you've experienced disability hate crime in school. And like, how did that make you feel and what was it like to go through that experience?

SPEAKER_00 16:19

Um, well, it kind of made me feel like I didn't belong um when I was going through it. Like I felt like my disability was something that I should be ashamed of. That obviously you can't help when you're born with cerebral pausy, like it's brain injury happens at birth, you don't choose to have it. Um but obviously when you're getting called like the slur words constantly every day and and whatnot, and always being told you're stupid and everything, you start to believe that as well. You're like, oh, maybe I am a bit stupid, and and I didn't realise I'd actually experienced a disability hate crime until after I'd left school and I started to look on campaigns. And I was in town one time and there was a border saying disability hate crime and hate crime, and I was just there, like, what's all this about? Like, I like this, and I got into it and I was like, I want to make change. Like, I wish I'd reported it because it's so important, um, because it doesn't get reported.

SPEAKER_02 17:08

I yeah, I think disability account, 80% of disability acronym goes unwanted. And people might be wondering, oh, what is a hate crime? How do you define a hate crime? Because there's it's there's a lot of things that could be considered hate crime. It's not just kind of physical abuse and things like that. It's like how uh I'm gonna dig myself out this whole show and ask you to give me maybe a definition, your definition.

SPEAKER_00 17:44

Of course, so a hate crime could involve anything, it could involve religion, it could involve like sexual orientation, you know, all that disability is in with it, you know. So it's basically someone who targets that victim or that person into like abuse. Like it could be physical, it could be sociable, like you know, using slurs, using racial slurs, like all that kinds of stuff. Like that is classified as a hate crime.

SPEAKER_02 18:09

And particularly around disability, I think we've seen a rise recently in disability hate crime. I think because of some of the rhetoric that's been used. I mean, we've got a Labour government, we've got a Labour government after 12 years of conservatism. And yes, still there's a lot of this rhetoric around people on benefits, people change which I don't think is helpful, but what no, it's not what could be done about that in terms of the representation of disabled people to decrease these incidents of hate crime.

SPEAKER_00 18:50

Um yeah, like I definitely do feel like I would love to myself be on the panel or whatever for disability hate crime and discuss about it and tell the Labour government and you know everything like that, you know, how important it is to listen to disabled people and disabled voices because we often do get forgotten about um as well, which is unfair, and we are our society now. We see a lot more disabled people here. Um, you know, if it wasn't for us, we wouldn't have some of the access that we have now today. And you know, I think that we are important to this society and we shouldn't be going backwards, we should be going forwards.

SPEAKER_02 19:25

I think some people have also said on this podcast like if you're currently not disabled, there's a huge chance that you will become disabled as you get older, and I don't think people realise that.

SPEAKER_00 19:41

No, they don't.

SPEAKER_02 19:44

You know, being a good ally to disabled people will help everyone. Yeah, it will help everyone because when you get older, you know things deteriorate and I mean we were thinking about ambitions and the lack of opportunities in terms of career. Like, if what kind of career would you really love to go into? What is your dream job these things?

SPEAKER_00 20:09

It changes all the time. I remember when I was like really little, I wanted to be like an actress. I was literally there, like, I want to work hard and I want to be an actress. Like that was one of my main goals was like, yep, I want to do that. Like, I love watching movies and shows, and you know, and being somebody else as well. I enjoy that. Like being someone that you're not, it's like, yes, I thrive off that, and it's like, yeah, I'd love to do something like that.

SPEAKER_02 20:30

But also, I think for me personally, now as an adult, I feel I want to be an advocate and um you know, to talk to politicians maybe in the future when I get more of like absolutely like I'd say on the acting thing, obviously, that I've come across a lot in in the work I do. Like, there are opportunities out there, it's never too late. Um I'd say if you're interested in it, change just give it a go. I was like, we need more disabled actors.

SPEAKER_00 21:03

Oh yes, we do. We definitely do need disabled actors playing disabled roles because I remember when I was a kid, I watched Glee and I was like, oh my gosh, a wheelchair user, yay! Someone that grabs at me, and then when I found out he wasn't in a wheelchair, I was absolutely like, no. Like it wouldn't have been so hard to get someone who was disabled to play that role.

SPEAKER_02 21:21

Absolutely. Like on the flip side of that for me, there was an actor who's now a friend of mine, Carla Riedel, who's got CPU, who's in Tracy Beaker, which I remember watching when I was a kid, and Carla's now a a good friend, and like seeing Kara in Tracy Beaker really.

SPEAKER_00 21:40

Oh yes, Cara was I loved her.

SPEAKER_02 21:43

Oh yeah. I could have a career in the arts, and I'm really grateful that I've been able to kind of have that career. No, but it's not about me, Jane. This episode's about you.

SPEAKER_00 21:56

I don't mind listening, it's all good.

SPEAKER_02 21:58

Um Like, so you you're doing a lot in terms of strength and conditioning and all like how did that start? What motivated you to start your uh strength and conditioning training and how's that going?

SPEAKER_00 22:17

Um, so what made it start was I went over for America for an operation on my legs. I had to have lengthening surgery because they were really badly thing, like damaged and whatnot, and I couldn't really do anything, um, like move and stuff with it because my legs were so like fixated on just doing that all the time. So I had surgery for that to correct that, I had to pay for that, you know, funded it with fundraising. And then I was in America and they'd said to me, I need to find like a certain editioning coach or a personal trainer to train with me to help with my mobility. So I put on Facebook, like, is there anyone like that deals with CP and like can have me because I'll pay? Like, I don't mind. So then obviously Rihannon, who works at SDR Rehab UK, messaged me and was like, Yeah, I can work with you. And she's worked with me ever since. We it's been nearly a decade since we've been training.

SPEAKER_02 23:03

And what kind of stuff do you do with Rihanna?

SPEAKER_00 23:07

Um, I do a lot of stuff, it's quite like a lot of like medical dynamic stuff, but it's more working on like your glutes, be core, because people think that when you have CP, it's all about walking and like and everything, but it's not just about that, like it's about sending the signals that haven't been sent to the correct muscles and everything, and trying to relearn that we do muscle stem as well, which is great. Um, I love that, but it's kind of a bit like oh, it feels like a heartbeat on my leg.

SPEAKER_02 23:33

No, it's about neuroplasticity. People might not have heared that word neuroplasticity, but it's about correct me if I'm wrong, because you might know more about this than me, but firing up those areas of the brain that are down.

SPEAKER_00 23:49

Yeah, and just working on the body and strengthening it in a better way and relearning.

SPEAKER_02 23:54

And how how have you kind of developed physically? What difference does that make to you and and your kind of quality of life is a subjective term, which I don't really like.

SPEAKER_00 24:08

But such a medical thing to say, isn't it?

SPEAKER_02 24:12

Sorry about that.

SPEAKER_00 24:15

No, I think it has helped uh my like posture and stuff and how I sit and also like um working upper body as well because my upper body strength was not like the weakest, but it needed a lot of work on because you know I'm CP and that. So it has helped with my core muscles because they were a little bit weak before I had like any of the STL surgeries that I had in America. I needed to work on that to be able, you know, to walk, you have to have your good core strength and stuff. So I worked a lot on that. I was actually like, right, I need to work my butt off. Yeah, get this.

SPEAKER_02 24:48

So people might be thinking, oh, why did you have to go to America to get this done? Why isn't it available in the UK? So why why is that? Yeah.

SPEAKER_00 24:59

Okay, so there's a long story on this part, but um, it is now funded in the UK, the selective dorsal rhizotomy surgery, which is a spinal surgery that involves cutting the nerves in the spine. Um, but if you reach a certain age, the NHS don't like you having it. And if you're also like if your gross motor function is like a three, four, they don't really like you to have it on them. They'd rather you be like a one or a two, um, which is kind of a bit like that's not fair, like type thing.

SPEAKER_02 25:26

Um, is it kind of penalizing people with like more whose CPA is maybe more severe?

SPEAKER_00 25:35

Yeah, yeah, basically. It's uh because I remember I went to the London one in in London with my dad, and they just took one look at me, didn't really fully examine me, and just went, Yeah, you won't be c a candidate. And I just went, Okay, that's cool, because I'm going to America anyway. I only came because I wanted to shut my dad up.

SPEAKER_02 25:52

So, like, what what does the surgery involve? Like, is it quite invasive?

SPEAKER_00 25:57

It is quite invasive, yes. They have to like obviously put you to sleep, open your spine, and then cut all the like nerves, but they have to test them first, and then they cut like the nerve endings in your spine, which is quite a severe surgery because if they cut the wrong nerve, you can end up paralyzed and stuff. So they have to be really careful on what nerve they cut, how they cut it. And I was just there, like, I'm going to America because that's the only hospital I trust.

SPEAKER_02 26:21

Which is funny considering you know, the American healthcare service, private healthcare, you know. Maybe it should be available on the NHS. Like, what kind of a difference has it made to you in terms of day-to-day, really?

SPEAKER_00 26:38

Yeah, well, since having the SDR surgery now, I can walk with tripod sticks like short distances, which is great because I couldn't do that before. I still obviously have because I had the SDR so later on in my life, I do now have spacity in just my right leg, which is a bit of a shame, but it's not the end of the world. Like, I can work on that, I can get Botox injections and and medication and stuff, which is like, yep, okay, I will plod along.

SPEAKER_02 27:04

Do you do you wish that? Oh, I wish I'd done this, Tennessee. Do you wish you had it earlier that you knew about it earlier?

SPEAKER_00 27:12

Now, not so much, no. Like, I'm actually so grateful that because I know a lot of people in my position wouldn't have been able to have the SDL surgery. So now I'm like, oh well, I've had it. I'm I feel privileged, I feel very lucky, um, and whatnot. And we managely got the funding, and obviously the nominous donor donated the money. So I feel very, very grateful that I was able to have the surgery.

SPEAKER_02 27:33

Absolutely. Like, and I think there's a conversation you did about access to treatment and as an adult when you have CP. Oh, I have you noticed that kind of drop-off between child and adult service.

SPEAKER_00 27:50

The amount of doctors I saw as a child was so much. I remember having like four appointments in one day just to see different specialists. And then as soon as you hit 16, it's almost like they slowly start to like, bye, you're independent, you'll always have CP, but you know, you're on your own in this.

SPEAKER_01 28:07

Not this.

SPEAKER_02 28:09

And it just kind of disappears, doesn't it? So what and like CP is still not really recognised as a lifelong condition, which is baffling because I've spoken to 30 adults with CP this month. We exist.

SPEAKER_00 28:28

We exist. We do exist, yes. It's always like children with CP are like obviously they're primarily important because they need to learn stuff, but then it's like adults become CP too, like we don't just disappear.

SPEAKER_02 28:39

What what more do you think needs to be done to improve like the availability of treatment for adults with CP?

SPEAKER_00 28:47

I do feel like we should have the same health care as well, because we don't get like that, and I also find it's really difficult for anybody now to even see a doctor. But I remember I would always have a GP like appointment every like fortnight where I'd see a GP to make sure that everything was all going okay and whatnot. And now it's like, oh, it's two years, or maybe I have to call them whenever I want to see them. So I do feel like the um the government and the NHS need to like look into adults with CP and also like get more research as well, because obviously we do experience adult aging as well earlier. Yeah, like aging with CP, you age quickly, I find like your bones in that.

SPEAKER_02 29:24

Because I suppose we use so much more energy than neurotypical people. That's the the Richard Luke and Sarah Edwards and lots of people brought up on previous episodes. Like, yes, when things change, it's like, oh, is that just a growing older thing, or is that a CP thing? Yeah, being exacerbated by the process.

SPEAKER_00 29:52

And how they say as well that like CP isn't progressive. Like, I understand the whole brain damage isn't a progressive thing, but obviously as you do get older, your muscles do start getting more tighter, and because you're using them in the wrong way as well, I always find because you know our brain's ending it wrong, and we're just getting more tighter when we're trying to move and stuff. So when they say like CP isn't progressive, I'm like, well, actually, it can be because some people do get like worse.

SPEAKER_02 30:15

And if you say you've learned to walk in a certain way, which works for you in terms of getting around, but maybe the way in which you're doing that in terms of how you're doing it might be damaging some muscles. Yes. And I think what you're doing in terms of SDR and what I'm trying to do in terms of playing tennis, staying active, getting moving, is is so important.

SPEAKER_00 30:40

Oh, yes, it is so important because a lot of like non-my non-disabled friends are always like, Why are you doing like something conditioning? Like, what's the point in doing that? You've had the surgery now, and I'm like, I've still gotta be active, I've still gotta be moving. Like you'll lose if you don't use it, you'll lose it. And yeah, absolutely.

SPEAKER_02 30:56

And did you feel like when you were gonna get that that element of fitness and sport was available to you, or did you feel kind of excluded from that?

SPEAKER_00 31:06

Um, I never really I remember doing Whiz Kids as a kid, and I did enjoy some other sports, but I never really like because my parents don't drive, it was very hard to get to places, and I didn't have PAs and whatnot. We didn't know we could have PAs until I was like 15, and I was like, Oh, I could have had a PA this whole time. I used to bring my friends along to drama school with me, like drama classes.

SPEAKER_02 31:27

Okay, like it's uh that thing is well not knowing what's available.

SPEAKER_00 31:32

Like, if you don't know what's available, you don't know what opportunities are often you like, and that's so important to like know because you know if you don't know anything, you're not gonna know, and it's just like the fact that some things are just like you have to figure it out yourself.

SPEAKER_02 31:48

It's like oh and how much you can't stop being a barrier. You've mentioned that you found don't drive. Is it difficult for you to physically get to places and would you consider learning to drive yourself? Because that's how I'm doing at the moment and finding it quite challenging.

SPEAKER_00 32:08

Yeah, of course. Um it's really difficult because transport is like such a like I find buses so unaccessible, even though they've got the ramp, they've got the wheelchair, like you can go in. But if there's like a pram or an elderly lady with a trolley, it's really hard to get into those areas. So they haven't really like bus companies haven't really looked on how disabled people go into those things because they have that massive like bell thing in the middle, and it's like, well, that is really, really like stopping me from getting to the backrest. Um it's like but obviously I want to learn to drive, but um, I'm on medication that will probably like prevent me from driving. Uh that's and obviously my eyesight needs to be sorted as well, so yeah, that's another thing that I need to work towards.

SPEAKER_02 32:52

It's hard, like for me. I'm enjoying learning, but it's frustrating when there are things that are making it more difficult and my drawing structure is lovely, and she's like, Oh, you there's only a certain degree to which you can control that because it's because of your brain injury that this is so difficult. But at the same time it's frustrating because I've been learning for for only the you know, ten months and I'm still not ready to pass tests, but hopefully that will improve Jade.

SPEAKER_00 33:30

Oh, hopefully, yeah.

SPEAKER_02 33:32

And um like I I really enjoyed the chat and thank you for coming on, Jade.

SPEAKER_00 33:40

Thank you so much for having me.

SPEAKER_02 33:43

The last thing I wanna ask you is what is one thing that you wish people knew about cerebral palsy?

SPEAKER_00 33:50

Oh, the one thing. There's many things I want people to know about cerebral. Just one thing. One thing. Um I would say don't assume what we can't do, because that is a huge thing. People always assume when you have cerebral palsy or you tell them you've got CP, they're like, oh, you can't do that. You've got CP, and they always try and like set expectations on you. But I always like proving people wrong that do that to me. I'm like, I will do it. You said I can't, I will do it now.

SPEAKER_02 34:16

And I think also that thing of when you're in public, maybe with your friends or your parents, and the person talks to your friend or your parents rather than talking.

SPEAKER_00 34:26

It happens still now. I was on the train station going to Cardiff, and the guy who does the you know accessibility for the trains, he didn't speak to me, he spoke to like my like a sister. She's like a sister to me, but she spoke to her, and I was just sitting there like, I spoke to you first, like I do exist.

SPEAKER_02 34:43

So like I think it goes back to what you were saying earlier about education. The education needs to be in schools, it does make it just normalizing it, not making a big thing of it, but like disabled people exist.

SPEAKER_00 35:02

Yeah, and getting a disabled person to go into those schools and basically talk to those kids and have lessons and stuff as well. I think that's so important as well.

SPEAKER_02 35:11

And if people are listening from schools, maybe like if there's an opportunity to do that, I'm sure I would love to do it, but I'm sure Jade would love the opportunity to go in and do that as well. So feel free to reach out Ian or Jade and yeah, hopefully we get that uh going. Thank you so much for going on. It's been lovely to speak to you.

SPEAKER_00 35:37

And thank you so much. It's been so lovely as well. It wasn't so daunting as I thought it'd be.

SPEAKER_02 35:42

I told you you didn't need to be nervous. Um, that's it for this episode of the Falsey Podcast, and nearly it for the Falsy Podcast in general. We've got one more episode left, and it's going to be a little bit different. So we've got a bit of a surprise for people who are listening on tomorrow's episode of the Falsy Podcast, episode 31. I can't believe it's the end of March. Um I've really enjoyed James, and I hope you have as well. It'd be lovely to hear some feedback from some of the episodes that maybe you've listened to. Um so please feel free to like, subscribe, share, and comment on Apple Podcasts, Spotify, or YouTube. And yeah, thank you to Jade for joining me today, and thank you for listening. But for now it's goodbye for me, and goodbye from Jade.

SPEAKER_01 36:38

Goodbye.

SPEAKER_02 36:41

Thank you for listening to this episode of the Palsy Podcast with me, Hugh, and for sure. I want to thank my guests for joining me, and I hope that you'll stay tuned for the next episode. Thank you.