The Palsy Podcast - Episode 24 - Abbie Hills

Ciaran is joined on today's episode of The Palsy Podcast by Abbie Hills. Abbie is an actor and talent agent, and founder of The Dazey Hills Company. Abbie quit her job at 23, and started her own talent agency, she now represents maybe clients in the acting industry. Abbie has also written and directed several of her own short films. 

https://www.abbiehills.uk/

@itsabbiehills

Transcript

Ciaran 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 Marty is Celtic Palsy Awareness Month to market, I've decided to interview interesting people who have Celbo Palsy 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, Ciaran Fitzgerald. We're at episode 23, I was saying, I should have checked this before I started recording. I think we're 23 or 24. The number of this title of this podcast will tell you which episode we're on. Um if you're new to the podcast, the Palsy Podcast is something I'm doing in March to raise awareness of sour palsy and cool people who have CP because March is Cerebral Palsy Awareness Month in the UK. And today I'm delighted to be joined by Abby Hills. Hi Abby, how are you doing?

Abbie 1:34

Hi, I'm good, thank you. Happy birthday, nice to be here.

Ciaran 1:38

You get we're recording this on the 22nd, which is my birthday. Um, but yeah, it's cool to be chatting to you today and thank you for giving it Sunday to do this. My first question, I tend to kick these off in the same way. Of like, what was it like growing up with CP and what were your experiences as a kid like?

Abbie 2:03

Oh, very mixed, very mixed. I um, you know, I was diagnosed when I was two uh because I didn't I wasn't really walking and my body wasn't behaving as it should have. Um I wore special shoes, I wore Pietro boots up until the age of about eight or nine, and then was like super excited to get school shoes from Clarks at the time. That seemed like the coolest thing ever to wear shoes like everybody else. Um was never particularly like sporty or anything like that, but so I have a taxic hemoplegia that affects the left side of my body, but it does largely present as non-visible. So I feel like once I wasn't wearing Pietro boots anymore, it's kind of like everyone just stopped thinking about it, and I you know I I felt quite different, but I I didn't really identify with with why until probably like early secondary school then. Um quickly realizing.

Speaker 1 3:07

Did you ever use a walking frame or a chair or any mobility or anything like that?

Abbie 3:12

No, I never used a walking frame, but I did have a wheelchair. I've still got it, but I don't use it. I used a wheelchair for a few months when I was at uni, um, but it was manual, and I just couldn't hack pushing myself, so I'd have to get other people to to kind of push me and support me. So so my journey with it has been, I guess, kind of in and out. Like, I'll need a bit of support and then it will kind of go under the radar, then I'll need a bit of support, then I'll go under the radar. But now from the age of like 17, when I have my brain scan, I've now it's it's a lot more um prevalent in my life, like as an adult when I have to just function and just do adult things. Um, and then also beyond that, like my kind of advocacy work around it and yeah, and the community I've built is all really important, so it's more it's more like at the front of my life now than it was when I was a kid, and I I kind of push for more support for myself now as well.

Speaker 1 4:08

And and what was school like for you? Did you enjoy school? What were you good at?

Speaker 4:15

Did I enjoy school? Yeah, I think I did. I uh there's little things I hated, like PE lessons I found really embarrassing. Um, going up and down the stairs without holding a handrail. You know, when the bell goes and then it's just kids like running left, right, and centre without not being able to get to a handrail and stuff like that. And obviously, people would would make some jokes and things about me, but I was, you know, I found it all right, and I I definitely became quite mouthy and a bit of hard work from like year nine, year ten onwards. Had a had a bit of a rebellion phase, and I I think now, like looking back on that, I think because I knew I was different, still didn't really identify with why or what made me different or how my body worked. I think I just kind of leaned into that in the way that I dressed and the way I behaved, and you know, I was quite a gobby kid. All I wanted to do was just hang out in the drama room, that's all I wanted to do.

Speaker 1 5:10

Um, so when did that interest in the arts and theatre and acting start then? Was it good?

Speaker 5:19

Oh, my interest, Kieran. I I think you know, after having such a dramatic entrance to the world with being like eight and a half weeks premature, I think I was always a diva. Like I always wanted to act or perform or write or like put on shows for my parents, and always, and then I just um it stuck with me to the point of being stubborn where I was just not interested in anything else. Science was a waste of time, maths was a waste of time, English I kind of liked because I liked writing, but I just wasn't interested in anything else, you know. And people grow up and say they want to like be a vet or a doctor, or it no, absolutely not for me. Like it was always working in entertainment somehow.

Speaker 1 6:02

But did you think I want to be an actor, I want to be a writer, I want to be a director. Was that in your head?

Speaker 6:08

I think I wanted all of it, to be honest. I think I wanted all of it. I think I was like, oh, you know, I could just uh you know, eight eight-year-old me, nine-year-old me just got her shoes from a clerk because she could take on the world and be like an international superstar. But yeah, I think it probably started with acting. Um, yeah, but it's always it's always been in me that like wanting to work in entertainment, which I'm lucky for really, because it's given me real drive and determination, um, and ambition and things like that. I've never had any confusion or doubt like around career and stuff like that.

Speaker 1 6:44

And like in a lot of people have spoken about the difference from going from primary school and having a good level of sport to going to secondary school and it all changing. So, was that the case for you in in comp when you went up to complimentary school?

Speaker 7:03

I didn't care about sport. I hated PE. But I don't know, I don't know if I hated support. Oh, support. Oh, um I I didn't really have a great deal of support then. I I had physio until I was about maybe seven. Then after that it kind of it kind of stopped, and then I I moved house, so I moved um from literally like an hour up the road. But it's like the when I moved down here, I didn't know I didn't have any support then. Um it's kind of like there you go, off you go.

Speaker 2 7:38

We get on with it.

Speaker 7:41

Yeah, exactly. So I went from like I don't know if um if you've had this, but I remember like being like, yeah, six or seven and having to try and stand on one leg while holding onto a frame and counting the apples, like one apple, two apples, like to count the seconds, and it's just yeah, that's my that's the extent of the support I had. That was it.

Speaker 1 8:03

That's so like you were just left to get on with it, like no physio, no architecture, no, nothing. And and people have spoken on this podcast about the drop-off in terms of adult services, but the fact that you didn't have any as a child either. That's quite shocking to me.

Speaker 8:24

Yeah, yeah. We um I actually went to Parliament on Wednesday with the Up CP movement because they um all of their work is around support for adults with cerebral palsy, and the the reason we were there is because we were talking about and lobbying for annual reviews for people with CP, and like I think that'd be brilliant because for me, like even now, because mine presents as non-visible, I really struggled to like get support with anything. But I um I was having problems with my feet last year, and I got told you know, I I had to really fight for a I don't oh, I don't even remember the name of what that what's a foot doctor called, whatever whatever a foot doctor is, uh podiatrist, yeah, podiatrist, that's it, that's it.

Speaker 1 9:08

Pediatrician is kids, and I get the tumor itself, quite okay.

Speaker 9:14

Okay, yeah, that's probably why I'm confused. And he took one look at me and he was like, Yeah, you walk fine. I thought, but I don't feel like I walk fine, you know, because I I think you how you feel is very it can be very different, like you know, my body's working over time, the same as anybody is with CP, and but yeah, anyway, so never really had a great deal of care at all, really.

Speaker 1 9:36

God, uh that's quite shocking for me to hear. But like then coming to the end of school, how did you make those decisions about uni and what you wanted to do? Did you end up going to uni? Where did you go? What was that experience like?

Speaker 9:54

So I started my uni journey actually in Cardiff. Um yeah, so I went to USW, but it wasn't really for me. I think I liked the nightlife in Cardiff more than I liked the uni.

Speaker 1 10:06

So I went to USW. What did you do at USW?

Speaker 10:10

USW, I did film.

Speaker 1 10:13

Did stapes teach you in staples?

Speaker 10:17

I don't remember. It was a long time ago. Oh, okay.

Speaker 1 10:23

But like you didn't so what was that experience like at the start?

Speaker 10:28

Did you not gel with tell me about it if I to be honest, Kira, I was so hell for leather on wanting to party at the same rate as everybody else that that was like my main interest. Um, but actually the course wasn't really for me either. The course um it was very theory-based, and I wanted kind of some practical elements of filmmaking, so I dropped out and then I went to uni at Solent, which is actually really close to where I live. But I um it it was commutable in the sense of like distance-wise, but it would have involved like a bus and then a 15-minute walk. And at that time, my physicality, like I was struggling um with walking and stuff like that. I mean, I still do, but I I think I'm a lot stronger now. So and I also I wanted to be in halls on the halls experience, and I wanted to like be able to like fend for myself. You know, when I started in uni and I was living in halls, I couldn't even cut a potato, like I just didn't have the dexterity to do it.

Speaker 1 11:29

Had you had the experience of living independently before, was that the first time? And and what was that like living independently, having that independently?

Speaker 11:39

Um yeah, because I've been living with my parents before then. Um oh, I loved it. I loved it. I mean, I got annoyed when I couldn't do certain things, and you know, like I found it quite tiring, you know, cooking for yourself, um, washing your clothes, walking to the shop with your friends, walking to the pub, like trying to trying to do the social thing and live and go to uni and do the uni work, um, and later on as well get a job and kind of hustle and network and stuff like that. Was a lot, um, you know, it's a lot for anybody at 18, but I think it's especially a lot when you live with a condition that we have.

Speaker 1 12:19

Like the amount of energy we use comparative to neurotypical people. I've used three to four times the energy people with CP use. Yeah. So trying to network, go to lectures, socialize, stand up straight. That's a lot when you've got CP.

Speaker 12:40

This is why I eat like five meals a day, and I'm not even joking. I eat so much because I burn so much energy. I burn so much energy.

Speaker 1 12:50

And like, how did you like? I want to move on a little bit. So, like, after uni trying to break into the industry, what was that like? What did you how did you find your way?

Speaker 13:03

Kind of it kind of started a little bit before for me, actually. So I um I had my first job when I was 15, like little acting job. Um, and I'd been going to like drama classes and stuff before then, I'd done quite a few auditions for like really big stuff. So I'd always been networking and hustling and everything like that. And I think because I was so tunnel-visioned on what I wanted to do, my parents just really supported me with it, and like they, you know, they kind of did the safeguarding thing, but let me essentially just network and hustle and find my own opportunities. So by the time I was 18 and I'd made a couple of well, by the time I graduated, sorry, and I'd made a couple of films and got to know people on the scene in Southampton. I'd just really been networking and hustling the whole time. I wasn't really intimidated by going out into the real world because I felt like I'd hustled for it already for so long.

Speaker 2 13:53

Yeah.

Speaker 13:53

I mean, that was like, you know, first job at 15, that was 15 years ago. I'm you know, 30 now, so it's been a long, a long old time. Um, but I I think I I still wasn't particularly ready to. It's weird, like despite me saying I've always known what I want to do, I think when I actually graduated, I was like, what am I gonna do now? Because I don't I don't know, like entry-level film and TV position, I am I gonna be able to do that, sustain it either on set for 12 hours a day or in an office, and then I was like, oh my god, everything I've always worked for is like not gonna work, blah blah blah blah blah blah. So I just sort of wanted to bide my time to think about it some more, so that's when I did a master's.

Speaker 1 14:38

And like, was did you have that fear because of like the access barriers that you felt were there? Because the industry isn't really that accessible for disabled creative, still, it's getting better, it's still not great, is it?

Speaker 14:55

100%, yeah, that's exactly it. It was the access barriers alone. I was like, I I'm not physically capable enough, nor should I have to, you know, kind of go a bit underground with it and hide the fact that I have CP. No, but also if I tell people that I have CP, I'm probably not gonna get hired because let's remember this was like 10-12 years ago. Um, you know, so it was it was a really hard thing to do and a really weird line to walk, no pun intended, which I did struggle with. I did struggle with.

Speaker 1 15:30

Great. We'll give you the job Abby. Just walk in a straight line.

Speaker 15:36

Oh my god, that would give me the fear so much if that was a job interview. Could you imagine?

Speaker 1 15:43

Absolutely. I'm gonna refer back to my questions. Um, so writing, like you've written, you've directed, but writing, have you always written is uh something you've always enjoyed?

Speaker 15:58

Yeah, I've always loved writing to the point where like when I was a kid, and my granddad used to keep these, um, I would I would just fill exercise books with stories, but um not originals. I would like I would like take all of the the fairy tales, pick bits of them, basically steal all the ideas, mash it up, call it something completely different, and then I'd be like, I wrote a book but like into the word style when you did something. So I was always writing a silly little thing, always really creative, always like walking around doing funny little voices, yeah, loved it, and then um, you know, was writing throughout uni, and then it kind of took a bit of a backseat, and then started in the last kind of year and a bit, really taking it seriously as like a viable career option for me.

Speaker 1 16:51

So what kind of things are you writing at the moment, shorts? Oh kinds of stuff really.

Speaker 16:59

So I've got a feature that I've written. Um I've got two pilots for TV, um, not so much shorts anymore, but I actually started writing a novel in lockdown. Wow, and she's she's collecting dust. I need to pick that back up again. But I was like, wow, it seems like a really great time to write a novel. So, you know, I got like 70,000 words in, and then I just kind of forgot about it. So I need to, that's kind of a commitment to myself is to have another bit of a look at that. But I just love world building, and I particularly love um, I guess in some ways I'm a bit of a history geek. Like, you know, my novel's set in the 20s, one of my scripts is in the 60s, the other one's in the 70s, and I love like music of the time, the culture of the time. I love like geeking out on it and world building in that sense. So that's that's the thing that I I really really love.

Speaker 1 17:50

And do you have a process, or does it depend on what you're working on? Do you have a set-writing process?

Speaker 17:58

Um I think recently it's it started with music. I think I get so inspired by music, and I there's so many different like decades of music that I love and styles that I love, and so it doesn't take me long for my mind to kind of run away with it and just yeah, so that's always a good starting point, or even fashion, or I mean, sometimes I'll just have a random idea, and then I will just um I I don't really I don't really plan. I don't think the ADHD in me likes to plan too much, so I just tend to like I'll probably get a a um a notebook and I'll like draw. I I don't draw by the way, so this is funny. I'll like draw what I think the characters will look like um and kind of visually create it rather than like doing a beat sheet or plotting it all out, um, and then I'll just get totally into it.

Speaker 1 18:50

If you're anything like me, I don't know where the ideas come from, they just like appear.

Speaker 2 18:57

The ideas choose you, don't they?

Speaker 1 18:59

The ideas choose you, and when people ask how do you come up with ideas for what you write? I'm like, I don't know, it just happened, it just happens, yeah. It's happening. Yeah, I can't explain it. Um so um you you also are talented, Jim. So how did you decide to go into that and set up the Dirty Hills company?

Speaker 19:28

That was that was quite a an organic step for me because I was doing my masters at the time and I again I didn't really know what I was doing. Um but I I knew all of these amazing talented people, and like I was always recommending people for stuff and connecting the dots, and I thought like I could make 10% off this. No, but I seriously, like I I knew so many talented people in my area who maybe there was a barrier for the for the whole kind of London scene or the or the larger scale agencies to kind of get involved there, and that barriers annoy me anyway, like disabled or not, I think it's just the most frustrating thing. And so for me, it just made sense to be able to kind of do something about that. Um I think I'm really good with people, and I can really, you know, all of my clients are really different, and I think that I can be quite a good chamber in the sense of communicating with them how they need, understanding their journey, and I think that is one of the skills of being an agent that you have to master because not everyone's journey is going to be the same. Um, so yeah, that was seven years ago that I did that.

Speaker 1 20:30

What do you look for in a client if someone applies to you? What kind of actor do you like to work with?

Speaker 20:39

What yeah, what qualities, what I think you have to be genuine, and obviously, like let's take performance out of it because you have to be good, like you have to be believable, you have to be good, you have to be great, actually. But for me, like the other qualities are you have to be authentic, like you really do, you have to be yeah, genuine, you have to be loyal, you have to present yourself in a way. Like I'm I'm a real straight talker, and so when somebody like takes them around the houses, and it's like, can you just be just be generous? I'd be much more impressed with you if you're genuine and straight up with me. You know, you don't have to sell me all of the things you've done, and like you know, because I can see the talent side of it, but I have to be able to get on with you as a person, otherwise, I'm not gonna want to get up in the morning and hustle and try and get you work. Like if we don't get on, it's as simple as that. And probably the same for my clients as well. They have to get on with their agent, otherwise, it's just it's a strange relationship, and you can't you can't have that, you need to have flow.

Speaker 1 21:37

You need to understand each other and be working towards the same goals, I suppose. And what have been the challenges for you from setting up the agency to to now? What has that experience been like? What have you learned?

Speaker 21:58

Challenges, well, like Pretty much a year after I started, it was COVID. So there's that. And then a couple of years after that, there were writer strikes. Um, and then the industry is just kind of changing a lot. So there's all these external things, and then there's like one of the biggest things is like because I started it so young, I started it at 23. Um, and you know, it's a it's a real it's relationship heavy and it's reputation heavy. And so in order to gain the trust of people to start with, obviously, like, you know, I signed, I signed a few people, signed a few of my friends as well, because it's what you do when you're starting out and you're helping them, but building that reputation and getting the trust, because you know, some of the agents have been in the game for longer than I've even been alive. So, how do you how do you position yourself to be like trustworthy, um genuine, somebody that can actually work for you and get stuff done, work with you and get stuff done, has the right contacts? So, all of that, like prove like I I knew my word from the get-go and I knew what I could do, but it's proving that to other people, isn't it?

Speaker 1 23:06

And did you feel any sense of like imposter syndrome? You said you knew worth, you knew, you know, you knew what you could do, you know what your talents like. But did you ever feel, oh, I'm I'm only 23? Like, how am I feeling?

Speaker 23:25

Yeah, all all the time, like even though I knew my my worth and I was confident in it, you still you still have those moments. I think it's human too.

Speaker 1 23:33

Absolutely. Um, I'm gonna move on slightly. I'd like I was reading your website with New Bible, and the project that struck me was a short film called Immaterial. Um, so can you talk about that idea? What it's about, where did the idea come from?

Speaker 23:56

I would love to. So I took a break from producing for a while actually, and so Immaterial is the first short I produced in like four years, maybe more. Yeah, maybe more actually, um, which we shot last year. So my friend Um Alexandra, she works in well-being, um, and she's an intimacy coordinator as well. And she but she writes and she wrote this um this short film that she was gonna direct. And we had a zoom, well, let me backtrack. We met on a panel at BFI Flair, and we just instantly um hit it off. Our values are very much the same, our position in the industry is the same, um, you know, as as women who are creatives, very much the same. And we just we just really, really vibed with each other. And then we were talking about her project that she was directing, and I was ever the hustler. I was like, oh, I've got a brilliant client to play the lead, you know, and she was she was fantastic as my client Holly Higby. She and she was the perfect, perfect cast, casting for Naomi. Um, and then yeah, I just I just went in as producer and I was quite scared at the time. I was like, oh, can I do this after this much of a break? But we worked really hard on it together. Alexandra also co-produced, um, you know, we did it together. We shot it in a weekend at a flat, uh, you know, like people really there for the love of it. We made it on under 10 grand, um, and now it's kind of during the run, we we've we've pushed it out into the world of the film festival, so we'll see who likes it. Um, but I'm actually taking it to the Cannes Film Festival short short film corner. So yeah, it's really great. Thank you. So, what that means is so it's not part of the official competition. Um, but can they run this like adjacent lab basically, where all day they've got the short films on a loop, and you can you can go and choose which short film you want to watch, whether you're a cinema lover, financier, producer, whatever, you can go in. Um, so it's really cool that it's gonna be there, and it's you know, it's it's kind of the first place people are gonna see it is in the south of France, which is wild. Um, but yeah, it was a lot of fun, and it's a it's a real, you know, it's a it's a hard-hitting drama. It's it's really gritty and really emotional. Um and it's it's it's a challenging watch, actually. It is a challenging watch, and I'm really excited to put it out into the world proper.

Speaker 1 26:24

Is there a way that people can watch it if they can't get to can?

Speaker 26:29

Not yet. We haven't released it. There will be, there will be.

Speaker 1 26:34

Please keep me updated with that. Like just off the back of that, we're producing how much of the challenges are actually getting that funding in place, particularly for short films. Do you think there is enough funding to support up-and-coming filmmakers to make their first or second shorts?

Speaker 26:57

No, it's really hard. There's only a select few kind of platforms, and ours actually, so it was privately funded in portion, and then we effectively crowdfunded the rest of it on Greenlit. But yeah, there's not, it's it's really, really challenging, and I, you know, had we not been able to privately fund, I think it would be totally different. It would be a totally different film, but um, yeah, there's not. It there's a there's so many barriers around filmmaking. Um, you know, it's all well and good for people to say, Oh, just go out and shoot something at the weekend with your mates, but we all know that that's sometimes that's not the reality, and particularly um if you live with disability as well, it's not that simple, it's really not that simple. So um really grateful for how we pulled it together. But yeah, the funding, the funding system in general is is flawed.

Speaker 1 27:43

And it's hard then for people to break through into the industry to start making pictures or make going to telly if they can't make their own work at the beginning. Because I don't know if you told us, but I was always told in uni, oh make your own work, write stuff, film it, make it. But you get to a stage where you can do that for free as a student. But once you graduate, it's a lot more challenging than and then with the added, like you say, extra energy and extra costs of being disabled that you have to factor in.

Speaker 28:19

Definitely, no, I couldn't agree more.

Speaker 1 28:22

Um, and you've also been working with uh Rosie Jones and the Rosie Jones Foundation. You've made kind of a documentary show. Can you talk a little bit about that? How you got involved and what you've been doing?

Speaker 28:37

That was so fun. So I met Rosie a few years ago. Um I was supporting the Creative Pathways event, which is actually coming up soon. The next one's in Leeds. Um, and it's kind of a I guess two-day, I think it's two days, workshop for young people with cerebral pausy from the age of like 14 to 24, I think it is. Um, whole host of workshops about, you know, maybe the creative industries, but it's oh, it's a super fun day. So we met on that, and then we just kept the conversation going, kept bumping into each other at events, and then we found out that we had the same type of cerebral pausy, and we were both the gobsilers. Yeah, yeah, because um, yeah, so I have um, like I said earlier, I have hemoplegia that affects the left side of my body, but it's ataxia, which is just kind of the back of the head, but um we'd found out that something like only 5% of people with CP have ataxia. So Rosie was like, I have ataxia. I was like, no way, I have ataxia. You know, it was really cool. So she came down to because she had a show in Southampton where where I'm from. And so we went around the new forest, we did some filming, we went and had a gorgeous lunch in the pub, we just like had a lot of banter around our ataxia, and and that was how the the video was born, really, because we wanted to kind of identify our our similarities and lived experience, and also I guess kind of support each other within that. And you you know this, like having friends with cerebral pausy when you have cerebral pausy is so important, it's so important.

Speaker 1 30:10

People who get it, people who you can like just be yourself around and chill and they don't they don't you know, they just get it, they understand, and it's that shared unspoken thing of yeah, you know what it's like, and that's even when the experience is different in terms of I mean, we can talk about uh severity, which I as we've seen on as I've seen on this podcast, it looks different for everyone, like no one's affected exactly the same, but I think we can learn a lot from each other, and you take little trick and tips from different people, you know, little bits of accessible tech that you can get to make life easier that someone's maybe found. But it does make a difference how people around you can get it, I think.

Speaker 31:08

100%.

Speaker 1 31:11

Have you have you found like you mentioned that your CP is less visible? Are there particular challenges around that that you find? Yeah, what are the I don't I didn't really know how to word this question, Ali. But like, are there particular do you know what I mean?

Speaker 31:32

I'm not really making much I hear you, like challenges with it and stuff. Like I so I guess if I'm having a quote unquote good day, whatever the heck that means, um I present like a like a brand new working sports car. Inside, I feel like I'm falling apart and I need to go to a mechanic, but because you can't see it, like people assume that I'm I'm fine, and like that's that's not necessarily the case, and I think I have to work overtime to to kind of match the two up, and I think like I have experienced a lot of ableism over the years, and you know what? Some of it's been internal as well, some of it has been internal because I you know I'm like, well, you know, you you look fine, like I that's a really outdated thing for me now, but I definitely believe that over the years.

Speaker 1 32:31

And I don't know if you get this, but like comparing yourself to maybe a match who not just evil, like why are they there? How can they do all this? Now that that is really tricky to deal with the internalized abolism of am I disabled enough?

Speaker 32:51

Am I am I disabled enough? Yeah, that's that's I I think that a lot, and then like you know, it goes to the other side of it where you beat yourself up. So yeah, yesterday I I've been away, I've been away on and off for like a month. Like, I'll tell you what, train line must be making a killing off me, the amount of trains I've been catching. And I don't um, because it's quite last minute, I don't always book passenger assistance. And some days I do feel like I can manage my staff fine and it's everything's okay, and other days I don't. But long story short, yesterday when I'd I'd come home and it was my first day at home for ages, I was so deeply, deeply exhausted, like deep, deep fatigue. I'm I'm sure you get it, and a lot of people listening to as well. But and it was so frustrating because it was like my mind was so so active, but my body was like, nah, mate, we're tapped out.

Speaker 1 33:44

So that is the worst.

Speaker 33:46

Yeah, I was resting all day, but I was I was too awake and too active to be able to sleep, but too fatigued to like concentrate on a task, kind of a bit too sensory-wired to even deal with the noise of the TV. And I just I don't know what I did or I could not tell you what I did all day, you know, because I I I just it was just this like almost like this functional freeze state where I couldn't I couldn't do anything, but sitting and doing nothing was absolutely unbearable.

Speaker 1 34:18

And did you do you get frustrated with yourself on the occasions like because I do? Yeah, I was feeling yeah, it's hard.

Speaker 34:31

Yeah, I was so grumpy yesterday.

Speaker 1 34:35

And like as someone who CP is less visible, do you ever have experiences where you're not believed where you get that kind of ableism from people? Yeah, it must be really difficult in a different way.

Speaker 34:56

Oh, I can't stand it, it's so exhausting. And I even had it in the taxi the other day, like I was chatting to a taxi driver um about cerebral pausy, yeah, and then he said, Um, oh, you you really inspire me with your which obviously like made me sick. I hate that. Um, I don't know if you hate that as well, but I hate that.

Speaker 1 35:16

I hate that unfortunately, yeah.

Speaker 35:19

And then he went with your condition, and he went, I don't want to say disability because it doesn't disable you. And I went, Oh, gonna stop you there. I actually identify as disabled and I find it quite empowering. And he didn't really know what to say, and I've only just started to speak up like that because like who are you to tell me that like I the thing is sometimes it's meant as a compliment, which makes it even worse. There's no there's no kind of good way about doing it, but yeah, I've had it, I've had it for all my life, really, and even even inflicted on myself. I think there was a point when I was in my early teens, there was somebody in my tutor group who also had cerebral palsy. I think he had diplia, he had it in his legs, and I was like, Well, I don't have cerebral palsy because he's got it, and he's got it like the proper one, and I don't have the proper one, which you know, young me, even I didn't know the whole the whole spectrum of it, and I I felt like I wasn't able to identify because it presented in a way that was not enough, like not disabled enough, and you know, I saw the struggles that this kid went through, and like even the bullying and stuff like that, and I was like, I don't have that. I don't I don't have that, but I have something, but it's not that, and how can how can it be that when it's called the same thing as my thing, but it's so different, and yeah, I just went in loops and loops and loops about it, and now now that I've grown up and it's become more of a part of my life, and I know more people with CP, and it's you know, it is a huge, huge part of who I am, as well as you know, doing work and accessibility, like I see it totally different.

Speaker 1 37:01

But yeah, for a while, like the worst judgment probably came from me, and that's horrible to deal with that internalized ability. Like, I fuck on this on other episodes about how sometimes, like, because of previous experiences, you know, going into conversations with the assumption that people are gonna patronise and assume that I've got uh learning disability because of my speech, and then over trying to uh I don't know if this makes sense to trying to to prove myself in the situations, over-emphasize my intelligence, and so that comes from kind of internalized ableism, which is awful to deal with. Like I think if there was a bit more understanding of CP and and the fact that it is a spectrum condition, I think people would be more commodity and then we would hopefully feel less of this internalized ableism. The last thing I'm gonna ask you, Abby, is a difficult last question. What is one thing that you wish people knew about CP?

Speaker 38:18

Ooh, one thing that I wish people knew about CP.

Speaker 1 38:23

Only one.

Speaker 38:27

Uh there's so many things, there's so many things. Um that it's lifelong. That it's lifelong.

Speaker 1 38:41

That's come up a lot. The fact that services drop off once you reach 16 or 18, the fact that there's very little research into CP in adults, the fact that there's no video, no OTs, no feature language, and there should be right, there should be.

Speaker 39:01

100%. Our bodies are gonna change. I I already feel like since I've turned 30, I'm already experiencing stuff that I didn't have 10 years ago. We we age, we're gonna age differently, you know. We there's a chance we can age prematurely. There's all of this stuff, so yeah, people need to know that it's lifelong.

Speaker 1 39:26

And that thing of being told when you go, oh, CP doesn't get any worse, it'll stay the same, but not being told with the impact of aging, you might experience different symptoms as you get older. Just communicating that I think is really important.

Speaker 39:44

Yeah, yeah. I mean, I think you know, it is common knowledge that we burn energy like up to four times as fast. And so, in in like real basic terms, if you've got an iPhone that's what working four times as fast than everybody else's iPhone, then it's not like that the iPhone is going to get worse over time, but the impact is gonna, you know, it's that kind of thing. Like you need to be careful of it because other elements of the phone might wear out because the battery's knackered.

Speaker 1 40:14

That's a really good analogy, a really good analogy to finish on. Thank you so much for joining me today. It's been lovely to catch up. Um, thank you for listening to this episode of Paul's podcast. Um, all the previous episodes are still available to watch and to listen to on YouTube, uh, Apple Podcasts and Spotify. And I'll be uploading a new episode every day for the rest of March. So please stay tuned and please feel free to like, subscribe, share, and comment and send me any questions you have to ask any future guests. Uh but for now, it's goodbye from me and goodbye from Abby. Goodbye.

Speaker 41:00

Thank you. Thank you.

Speaker 1 41:03

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