The Palsy Podcast - Episode 27 - Richard Luke

Ciaran is joined on episode 27 of The Palsy Podcast by Richard Luke. Richard is Scope's Cerebral Palsy Specialist. Richard talks about his experience growing up with CP, and forming relationships and starting a family. Richard talks about his experience in becoming a dad, and the internalised ableism he felt. Richard is the programme lead for Cerebral Palsy at Scope, and has set up support groups for adults with CP. 

https://www.scope.org.uk/cerebral-palsy-network

https://www.scope.org.uk/helpline

https://forum.scope.org.uk/ 

Transcript

SPEAKER_01 0:01

Hello and welcome to the Palsy Podcast with me, Q and Fitzgerald. I'm a playwright, screenwriter, and podcaster from South Wales. And seeing as March is Cerbapalsy Awareness Month to market, I've decided to interview interesting people who have cyberpalsy 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 episode 27 of the Palsy Podcast. We're getting near the end of the month now. So uh Palsy Podcast is a podcast that I'm making during March to celebrate Silver Pulsy Awareness Month, which is in March, and I'm interviewing interesting people every day who have lived experience of CP. If you've missed any of the episodes so far, you can listen back um on Apple Podcasts, Spotify, or watch on YouTube. And today I'm delighted to be joined by Richard Luke, who works for scope. Hi Richard, how are you doing, mate? I'm fine, good.

SPEAKER_00 1:33

How are you?

SPEAKER_01 1:34

Really good, thanks for keeping myself busy this month, but I'm really enjoying it. So I I wanna start this interview the same way I've started every episode of this podcast. Ask you what was your experience growing up with cyberpulsic.

SPEAKER_00 1:57

Uh well uh I always knew I was different to people in my family um and their childhood friends I had, but it was never really an issue. My mum particularly was very upfront and very direct with things, uh, and how she would describe my cerebral holy. Um she had well when I was a teenager, she said, just because you're sitting on your ass mean doesn't mean to say you're not gonna do anything. So yeah, that's the kind of attitude that there was in my family. I think where it finally dawned on me that I was properly different to my peers, was after I had a lot of surgeries, uh 26 surgeries on my legs and feet in I think it's yeah, they call it year nine now, it was the third year when I was in school, and when I come back, I was more able to walk, I felt more vulnerable and fragile. That's interesting than I ever did before.

SPEAKER_01 3:04

Because before I used to play football or rough and tumble with my mates, but after I come back, even though I was more mobile, I felt more yeah, fragile, vulnerable, and and you you couldn't play football like you were football surgery.

SPEAKER_00 3:21

No, oh my god, no, I was too scared. Yeah, so I didn't want to do WWF wrestling, football, rugby, hockey, and and I remember one of my friends, he said, you got the same rich. And I tell you what, that was the moment where I thought, what have we done all this for? You know, and then that well that led to other issues that I suppose it was with my own identity.

SPEAKER_01 3:51

And like it's that thing, do you feel disabled and and like presumably after the surgery you felt more disabled than you did before that?

SPEAKER_00 4:03

I did 100%. 100%.

SPEAKER_01 4:06

And and what was school like for you? Like, what was your experience at school? What were you good at? What did you enjoy?

SPEAKER_00 4:14

Um, at school I enjoyed I enjoyed sports, I enjoyed English, I enjoyed creative stuff. Um, I couldn't stand maths, I've never been a maths guy. Even though I'm fascinated by things like that now, I just didn't have a natural flair for it at all. Um, junior school was great. Had a blast. Uh secondary school was slightly different for the first two years. Um, I got a lot of bullying, I got physically attacked for being uh disabled uh on more than one occasion. Uh one of the older kids said to my face, we don't want an S-word at our school. Oof. Yeah, oh it was it was brutal, mate.

SPEAKER_01 5:00

And then I were you one of the only disabled kids in the school, do you think?

SPEAKER_00 5:07

I was the only physical, physically disabled kid in the school at that time. I was a guinea pig um to go to a mainstream secondary school in Coventry, right? Um, but then I met possibly the best group of people I've ever met. They're like family, they're not friends, but they're like siblings to me. And we've been friends since we were in 11, 12 years old.

SPEAKER_01 5:36

And like how much did they help you, how much did they support you get through that time?

SPEAKER_00 5:43

Oh 100%, because once I think once people saw that um people wanted to be my friend, that changed the whole way they perceived me and saw me. Um and they just allowed me to be me. You know, we had a couple of giggles with style reflex and things like that. But because back then I didn't know what Star Reflex was, I just thought I was a weirdo. Oh god, you know, um, and I'm sure that I'm sure there were other disabled children at the school, but even then, you know, if you were neurodiverse or ADHD, you were just classed as naughty.

SPEAKER_01 6:23

They just call you naughty or yeah, you just didn't have the knowledge back then, and and you were talking about it being like a trial period to put someone like you in mainstream. Yeah. Like, did your parents have to fight for that?

SPEAKER_00 6:41

Yes, they did, and I had a teacher um that supported us as well. Because obviously, I went for not obviously you don't, but I went to mainstream junior school for year six and seven. Right. And then they kind of didn't know what they wanted to do with me because they always play, they always say, Oh, we haven't got the infrastructure and all this kind of stuff. So, yeah, I had a very supportive teacher, I had a very supportive mum and dad's.

SPEAKER_01 7:13

Um, so were you in a um additional needs school before that, before year five, and and so?

SPEAKER_00 7:21

Yeah, I did I did a couple of years at a uh a special school as we used to call it.

SPEAKER_01 7:27

Um was uh did you find that frustrating? Like what was that experience like?

SPEAKER_00 7:32

Yeah, I didn't like it. I've got to be honest, I didn't like it. Because I had non-disabled friends outside of school, yeah, where I lived on my street, and I saw what they were doing, and what they were learning, and what they were talking about, and there was just an assumption back then that because you went to a special school, you you didn't want to follow academia, you didn't want to learn stuff, it was all about you know, learning I don't know, not academic things anyway. I've got to be careful how we phrase it, yeah.

SPEAKER_01 8:04

But like more practical stuff, and you uh yeah, it's difficult, isn't it, Rich? But you being academic, you being I I don't want to use the word clever because that is loaded and all complications, but the way in which your brain works was better suited to the mainstream school.

SPEAKER_00 8:26

I think that it's not about being clever, I just really wanted to follow the curriculum that my friends were doing.

SPEAKER_01 8:35

Well I you know, I was interested in what they were doing, so and like how did it feel to then go into the mainstream? Was it a feeling of right I'm here now? Do you know what I mean?

SPEAKER_00 8:48

Yeah, yeah, in when when I went to year uh five and six at uh junior school, it was amazing. I really enjoyed it, I thoroughly enjoyed it. I enjoyed the structure and the kids were great, I had no issues whatsoever in years five and six, none at all, um, in terms of like discrimination or anything like that, which is rare in the 80s, but I loved it, I loved the pace of everything, um, and yeah, I thought this is where I meant to be.

SPEAKER_01 9:21

And then, like, what were you good at in school and secondary? What did you kind of think you could have a career in? Did you kind of have any idea what you wanted to do?

SPEAKER_00 9:33

Yeah, I wanted to be a sports journalist. I'm writing, and I'm absolutely football mad or sport mad, football, rugby, boxing. I wanted to be a sports journalist. Who'd you follow? That's great. Oh, I'm a Liverpool fan of myself. Oh yeah.

SPEAKER_01 9:51

Yeah, draft off of it this season, yes.

SPEAKER_00 9:53

Oh mate, I don't want to talk about it.

SPEAKER_01 9:57

So, like, was that journalism not available to you? Was it not accessible at that time?

SPEAKER_00 10:05

Well, interestingly, and it leads on to uh I think a question you want to ask later. Um, I remember being you know at a UCAS event at my sixth form, first year of sixth form, and I was told in front of my peers that university wasn't a place for people like me. Oh my god. Yeah, in front of everybody. So yeah, that really um that really changed things for me uh mentally because I felt like I I wasn't welcome and I had nobody that I saw in real life or on the media who was disabled and going on to university. I had uh I didn't have a a guide or and in my my family of very working class, yeah. Right, so university was the topy nose kids or people that were absolutely genius academics, you know. So my parents, my mum wanted me to go to uni, but it wasn't really like as long as I was doing something, it's so I went out and did college and worked instead.

SPEAKER_01 11:21

What was what was your kind of first job? Like how what was your route into employment? Was it easy or were there challenges to it?

SPEAKER_00 11:30

Uh my first over job was at YTS, right? A youth training scheme from a manufacturer, and my first job was cleaning toilets in a local sports centre for 28 quid a week. Oh my goodness, how did Yeah like you learn, I know it sounds horrendous, but you learn routine, you learn discipline, and even though 28 quid sounds like nothing these days, back then I was like, yes, mate, I've got some serious beer tokens here.

SPEAKER_01 12:06

But but did you ever feel when you were cleaning toilets on that worth yeah, oh I could be at university now, I should be at university now.

SPEAKER_00 12:16

I did sometimes and I looked back, you know, to clean my late teens, sort of early twenties, and thought maybe I could have. Um but to be honest, I was I was just focused on what was in front of me and where I wanted to get to.

SPEAKER_02 12:32

Yeah.

SPEAKER_00 12:33

You know, and I think that I was going through changes myself with a young man, and I realized that if you money, if you were working and earning, open more doors than if you stuck than if you went to the union back then. I mean, all of this is in the context of the time it was in, you know? Yeah.

SPEAKER_01 12:56

So I guess we were talking Margaret Thatcher was in power in Britain. It was early 90s, yeah. It was early 90s, so like 90s.

SPEAKER_00 13:06

Yeah. So I would have been what eight, 17, 18.

SPEAKER_01 13:12

But like I I'm gonna move on, so I we're gonna come back to like employment and things like that when we talk about the work you do in school, but I'm really interested in like how did you meet your partner? What was that like? How did you find like relationships and stuff growing up?

SPEAKER_00 13:30

Oh well, I met my partner in one of my family's pubs. Um yeah, and yeah, we we started out as friends. Um I think as a disobedious man, you have to approach relationships slightly differently, you have to build a friend a foundation of friendship first before they realise how hot you are. Um that's a joke, but yeah, that's that's how I that's how I try and approach it. It's like I wanted to get to know the real me. You know, the water's and all stuff. I think that I've from an early age I've always owned it and tried to own it, so I've not this can sound really conceited, but I never really had much of an issue.

SPEAKER_01 14:19

Um I think do you think confidence is a lot of being confident owning yourself and being comfortable in your own skin?

SPEAKER_00 14:29

Yeah, I I think so. I think that's a huge and that's not to say I've always been like this. I haven't. I've had like we all have had moments of of really serious self-doubt. But I think I grew up going to raves and things, you know, when it was yeah, and everybody just loved everybody mostly because we were off our heads, but nobody cared what you look like, nobody cared about your skin colour or whether you're in a wheelchair, or it was just about the music and getting on. So I I was around that type of person, you know, yeah, yeah, yeah.

SPEAKER_01 15:07

And they were there for the same reasons that you were there, and you were into the same duh.

SPEAKER_00 15:13

So there was none of this. I think now we'd like to put people in little boxes, you know, you're in this box, so yeah, you go over it and you're in but no, you know, you're Karen, I'm rich, we're not in a box, we're not confined.

SPEAKER_01 15:31

I I think this the whole online dating stuff has complicated it massively in terms of not uh beating but my generation of like having to be on the apps and stuff and it's putting a picture of self out there, which you know may not be 100%. Yeah, like it's made it more complicated, I think. In some ways, it might have been easier back in the 80s and 90s.

SPEAKER_00 16:00

I would not want to date now. I I have never I have never used a dating app, um, but I speak to young people regularly, and what you have to compete with is not just putting yourself across to somebody, it's dealing with uh I think an unattainable image of perfection that everybody seems to have now. And it doesn't matter whether you're you're gay, straight, bi, whatever you are, that that unattainable perfection is really really problematic.

SPEAKER_01 16:37

And it's not the reality because no one is leading these perfect lives. We're all flawed, complex human beings, but it's that image that is put out there on social media on these things, which is difficult, I think.

SPEAKER_00 16:53

Yeah. Well, I'm very glad our audience will respect Karen.

SPEAKER_01 16:57

You're not a hope. And like, do you think that people have got misconceptions about the prospect of dating disabled people?

SPEAKER_00 17:12

Oh, absolutely. You know, for one, you know, I think that the non-disabled community, not all of them, but they homogenize us. You know, so one disabled person is very much like another, which couldn't be further from the truth. You know, if you're a wheelchair user, then obviously you're paralyzed, so things are probably not as they should be, right? Well, we know that's not true. Uh, or the whole disabled people don't have the same sexuality drives as a non-disabled community, and another big one for me, which we try to address in the I'm a member of SHADA, the Sexual Health and Disability Alliance, is the infantile infantilization of disabled people, you know.

SPEAKER_01 18:02

So we've got a couple of well, a triple threat we have to deal with, you know, and and that can lead to like internalized ableism as well, and self-doubt and lack of confidence, and not wanting to put yourself out there because it's hard, it's really difficult, I think.

SPEAKER_00 18:22

For sure. I mean, we're seeing that as well in in a way with things like Louis Thurlou has done inside the manosphere. And let me tell you, I speak to a lot of young men regularly who helped live with cerebral poverty, and they very much display that sort of like, I'm never gonna find a partner, I'm never gonna uh have a family, I'm never gonna be this. But this is the online world telling them that this is gonna happen because you don't look a certain way. How how do we fight against that, Rich? How do we I think you need to be as as as low-racking as it is, I think you need to be as visible as possible. I think you need to challenge it at its source. I think you need to say, well, you can't uh homogenize people, you can't generalize people. Yeah, you know, that would be generalizing the whole non-disabled community for whatever reason. I think you have to challenge it and say no. I think the media needs to focus on disabled people and hate the term interabled relationships. Oh my god, it's disgusting because straight away it takes you back to the 80s when it was horrible or rare to have an interracial relationship. No, it's not horrible or rare, it's two humans that love each other. So if you give it a label, it sticks out more.

SPEAKER_01 19:54

And a lot of people might say, Oh, if your partner's not to the same, they've got to adapt to you, but also it's the other way around, you've got to adapt to them, you've got to learn about them, how they're how they work, how who they are as a person, you know, it's not a sacrifice, it's not a burden. Um and yeah, I just like with many of these things I've talked about this month, it comes down to education, and I think without trying to be repeaty about it, um, like have you and your wife um experienced any Aprilism during your literature?

SPEAKER_00 20:33

Oh my god, that's you know, not so much now, but she people used to say, Oh, nice that you'll bring him out, you know, and then ought to do, we'd have a good old French kiss, do you know what I mean? Then you'd go, Oh my god, I'm gonna report you and all this, and then you'd have people caught to her and we used to go clubbing and say, Do you want to go home with a real man? And all that sort of stuff. Oh, great. And she'd be like, No, I'm going home with the real one, thanks, you know. And it's all the standard stuff, but mainly the one that we used to get a lot is that my wife Natalie was my my carer.

SPEAKER_01 21:15

Yeah, that's really common. That's infuriating.

SPEAKER_00 21:20

Yeah, I don't get it so much now. I look a bit older, but when I was younger, I I think people struggle with younger looking people using mobility devices anyway.

SPEAKER_01 21:29

Yeah, I agree.

SPEAKER_00 21:30

I agree. Um but I think it throws the little brains of it.

SPEAKER_01 21:34

Yeah, yeah. And like in terms of you and that lady having family, having children, what was that process like, and how did you adapt to being a dad?

SPEAKER_00 21:46

I don't think we're adapted yet, and she's 17 years old. But I I I don't know, it just it was we we've been married a long time, it was something we talked about, and uh we we we We're trying for a children, it never happened. Certain things we had a miscarriage, blah blah blah. And it kind of put it into the back of our mind. Um I don't mean blah blah blah, it was painful. I'm just trying to go over it quickly. Um but then all of a sudden we had our daughter, and when we realized it wasn't, you know, it wasn't a drill, well, when I realised because it really fought to the fore a lot of my internalised ability. In what way? Oh gosh. Well, instead of thinking that I need to buy carry cots, bottle sterilizers, all the practical things you need to be a dad, I was thinking, oh my god, I can't teach her how to ride a bike. Oh my god, I can't help her learn to climb a tree, you know, we're not gonna run along the beach together, and I got into this absolute maelstrom in my head, and I've got to admit for the first seven months of the of our pregnancy, I didn't enjoy it at all because I was so wrapped up in how rubbish I was gonna be as a dad that I didn't really enjoy the stuff, and also I faced April when we went to antenatal classes. They didn't believe I was the dad.

SPEAKER_01 23:33

That must have been hard, like and that fed into your own stable, and like can go for you, can you do and I guess you didn't know disabled people did you know disabled people in similar situations who I knew one disabled mum who had a very different condition to me, but I didn't know any men who'd become fathers?

SPEAKER_00 24:01

That's all, and that's how I joined Scope as a volunteer, trying to find men in my position.

SPEAKER_01 24:10

So, how did you come to join Scope? Like, what was did you reach out to them?

SPEAKER_00 24:15

Like, did you well I hadn't wanted to go near Scope because of the name since I was a kid. I was like, I get called out of school enough, I don't need to hang out with you, you know, you know. So but I got into this, like I said, this headspace I was in, so I thought I put in Scope because I knew the name had changed. Yeah, and I was working as an immigration officer at the time for a Russell Group University, but I was really like stuck, and I was thinking, what can I do? And uh Scope had an online community, like a bulletin board a forum, and I created an account and I started posting on there, but I was getting nothing back because there simply wasn't anybody in my position, so I started volunteering on there for an hour a day after I finished my day job to be the person I needed, and I learned so much, I learned so so much.

SPEAKER_01 25:16

Um did supporting other people give you reassurance about your own situation, yes, yes, it did.

SPEAKER_00 25:29

I learned so much about cerebral palsy that I didn't know, not because my parents didn't tell me, but because we were never told. No, we were never told by doctors. The doctor told my mum when I was diagnosed at the age of three, put him in a home. Because my mum was really young, and she was like, F that, mate, see you later. Yeah, yeah, you know, but we were never told of like startal reflex, the spasms, the the swallowing issues I might have, the the speaking issues I might have. So I was absorbing all this information with my non-disabled mask on at a non-disabled job, becoming a dad. I'm thinking, oh my god, this is amazing. I'm learning all these things. Um, but back to being the dad, this is the single best thing I've ever done. And I want to make clear your kid does not care whether you're in a wheelchair, wear AFOs, if you're jittery, if you have trouble speaking or swallowing, your kid loves you and wants love and time from you back. It doesn't matter what that time looks like, and that's the one thing I need to tell everybody because you I ruined our pregnancy by thinking differently.

SPEAKER_01 26:57

That was really powerful, Rich. Thank you so much for sharing that. That and I hope that will have resonated with people maybe who are listening to that. And you're now the program lead for sabberpality for the charity scope. So can you talk a little bit about what your role involves?

SPEAKER_00 27:21

Yeah, I can. So I've been at Scope for eight years now. I joined, I applied for the job after being a volunteer uh for four years after. Um, and my role is to look after Scope's legacy community, which is our community, the cerebral poverty community. Right because as we know, Scope was a cerebral poverty charity. Um, and what I do is I work with a helpline team, uh, I do casework, I do referral work, I specialise in mental health and sexual health relationships. Uh I help with PIP support, I've you know, you name it, I've done it. Yeah, um, it it's a very broad role. I work with academics to to further research into cerebral palsy. Um, I use Scope's name to further research along. I'm in a very privileged position where my management team, you know, I say, I want to do this, and they say, Okay, uh, very lucky, they're very supportive. And I don't think that's what people see because they see a big corporate charity. Yeah. But we've we've scoped paid for the All-Part Party Parliamentary Group for Adults with Cerebral Falsy, uh, which has started uh the work alongside the annual reviews. We were also part of the annual review um design. I was a guinea pig, and that's all we think I didn't want to know as I was getting older. There we go.

SPEAKER_01 29:04

So, what progress have you made on that? Where are we with annual reviews like and stuff like that, and the recognition of CP is a lifelong condition?

SPEAKER_00 29:14

Like, I I think we're a lot further down the road than we were eight years ago. Um, I think that we're getting the research is about collating evidence, it's about collecting a body of evidence, so it's not one standalone piece, okay. Now we know it's a lifelong condition. Unfortunately, the NHS is like the biggest oil tanker in the world, and it takes years to turn it around. So now we've got the NHS referring to cerebral palsy as a child onset condition, right? Which means your access to other services because I don't know about you, I didn't hit 18 and all of a sudden I was playing for Liverpool.

SPEAKER_01 29:58

No, I I wish I could replay for the Swans, but that didn't happen.

SPEAKER_00 30:02

No, well, exactly. So we need to let them know that it's lifelong. You know, um, I've worked with some absolutely brilliant academics in my time. We've covered things about sexual health and women and girls with cerebral palsy because access to mammograms and pap smear tests for for females in our community is so low, not because they're not interested, the infrastructure, the understanding is not there. Yeah, we've done a big piece with the University of Nottingham into aging and cerebral palsy. We've done a big piece with Surrey about the eating and drinking classification system because who knew the older we get, our swallow function changes.

SPEAKER_01 30:47

I that's what I've experienced in the last couple of years. My has increased, which is really scary. Like and having to build it back up and like use different strategies is really difficult, but I didn't know that was going to happen to me.

SPEAKER_00 31:06

No, neither did I. Um I completely still carry about two years ago. I started having real issues. Um, and I thought, oh, what's going on here?

SPEAKER_01 31:18

And like that like coupled with like anxiety, uh anxiety around eating am I gonna talk what's gonna happen? Like just some reassurance of this might happen. Yeah, might have made that a little bit easier to deal with.

SPEAKER_00 31:36

Well, I think forewarned is foreign in a way, isn't it? Yeah. You know, I think with a whole getting older process with our wonderful condition, I think you can start to prepare for it, but if you don't know about it, you've got no chance.

SPEAKER_01 31:51

No, no, and I think uh the professional said, Oh, it doesn't get worse, but with the impact of aging, yeah, you know, certain things do get more challenging.

SPEAKER_00 32:04

They do. But the fundamental issue we have got here and with the NHS is, and I'm gonna say this, because non-disabled people can't acquire it in the way they can acquire multiple sclerosis or Parkinson's, it is not the same level of priority. So that is the ableism that is inherent in our health system, because if people who are non-disabled could acquire cerebral palsy, even though we all start off as non-disabled, then there would be a very different attitude.

SPEAKER_01 32:42

Do you think it's that thing of it can't happen to me? I but also that thing about it's one thing, like cerebral palsy is this the understanding that people have of CP might be the one person with CP that they know, and everyone with CP is affected differently. Do you think that's part of the problem?

SPEAKER_00 33:03

Yeah, I think it is part of the problem. I think and I work a lot with medical professionals, so it's not me having a dig at them. I think with our condition, I think uh you you you get a perfect store if I can describe the scenario. So you or I will go to the GP or say there's something going on, and they'll say, Oh well, of course it is, it's you know, you it's this, you're getting older with CP. The solution is very woolly, okay? Doesn't work, so then you don't go back to the GP again, right? Until you're in crisis, okay. GPs say, Oh well, we don't see a lot of people with cerebral policy. That's because we've given up. We've given up and we self-manage in whatever way that looks like. You know, I did a piece of work some years ago. On average, yeah, each GP surgery in the UK should have at least four patients living with some form of cerebral policy. That's not an insignificant number. No.

SPEAKER_01 34:09

And and yet the access to services isn't there, people are not getting the support they need. Yeah. You know, trying to get physio, trying to get speech and language therapy on the NHS, unless they can see a visible improvement, make you better. You know, they don't want to know a lot of the um No.

SPEAKER_00 34:30

We need to replicate the MS clinics. We need we need cerebral policy centres across the country that follow the the blueprint of the M MS clinics, and that is what we're gonna work towards. But it's gonna be holistic because it's mental health is a massive issue now. Yeah, and it's not the spot not because we're disabled, it's because we function in a system that is against us for the word go, whether that's employment, schools, health systems, uh just society, and it's gonna take its toll.

SPEAKER_01 35:11

And and do you think if more people understood the social model, do you think things would be easier? Do you think people would be more able to make things more accessible?

SPEAKER_00 35:24

I think that if we made more of the psycho-social model, yeah, um we'd be in a better place. Um but definitely the social model it's whether people actually see that as disabled people we're worth it. We've got to show that we're worth it. And I know it shouldn't be incumbent on us, but sometimes you've got to do the hard yards because people are they're not very bright most of the time. So you've got you've got to lead them by the hands and say, look, this is why this is wrong. I don't think there's any malice to them, but they just don't think deeply.

SPEAKER_01 36:07

No, because maybe they haven't come across it, maybe it's not other people say don't know, and maybe they're scared of saying the wrong thing, well, scared of doing the wrong thing.

SPEAKER_00 36:18

Absolutely. So that that's why, you know, it's the age-old thing when somebody says, Oh, what's happened to you then? Now some people can get offended by that, and I totally get it. I totally but to me, I think, right, this is an education moment.

SPEAKER_01 36:35

An opportunity, but yeah, like I think what you're saying is it shouldn't be a responsibility for us to educate people, but don't you don't be afraid to, yeah. Uh and with with school, you're um you've set up adult support groups across the UK. Um, can you talk about these support groups and how people can get involved?

SPEAKER_00 37:08

Yeah, so um as a response to the pandemic, we created a thing called Network CP, uh, which is the name of Autoscope CP work, it's network CP, uh, to address directly the isolation and fear that the community were facing at the time. And that has carried on. And now I'm joined by my wonderful teammates Sarah and Wales, and Lucy up in the north, you know Sarah well. Sarah was on the podcast earlier in the month. Yeah, she was she was excellent as always. Um, we we've set up different groups in different areas of the country, and you can access that by searching CP Network Scope, and you can sign up there. Um, we're trying to get more and more groups together, but as you know, transport as a disabled person cannot always be achievable. So we're we're looking into more hybrid meetings. People have said they want face to face, yeah. But then when it comes to getting to the locations that we find with changing places, toilets, etc. etc., it's not always easy, as you know yourself.

SPEAKER_01 38:22

Very difficult. Like, so are you kind of employing like a hybrid model?

SPEAKER_00 38:27

Yes, yes, going forward. I think hybrid works for more people because not only is transport, but sometimes we're shattered. Yeah, you know, sometimes we're like, oh god, you know, just click a button and just sit there with my camera off and listen to my people talk, you know. And that's what CPL is. You can be as engaged or as passive as you want to be, you know. You haven't got to come with smart, smart answers, you can just be with people that get you. That's all it is.

SPEAKER_01 38:59

Well, that's so important sometimes, being around people who get it, who understand you don't have to explain stuff to because that can take a lot of energy as well. And energy conservation first is so so crucial. Like if people people want to get involved, how can they get involved?

SPEAKER_00 39:19

Okay, so Google search or other search engines are available. Uh CP Network at scope, you can join there. Um, and then you you will get um newsletters, you'll get a zoom link to the monthly meetings, um, unreachable at scope anytime you need. So Richard.luke at scope.org.uk. Um, I will support you with any questions that you might have or any support you might need. I'm also in a lot of CP groups on Facebook. Um, Sarah and Lucy are also available. Um, but just I think the message is don't sit there on your own and stew over it. Ask somebody.

SPEAKER_01 40:07

Yeah. And and uh having people with with that lived experience who've been through it knowing it's like is really beneficial as well. Um I will share links to the things that you've mentioned in the description of the of this episode. If you can send them over to me, Rich, I'll stick them in the description. Um Rich, you've been lovely talking to you. Thank you for your time. My last question for you is what is one thing that you wish people knew about CP?

SPEAKER_00 40:43

No, one and a half things.

SPEAKER_01 40:46

Only one. Uh well, no, go on, one and a half. I'll give you one and a half.

SPEAKER_00 40:51

I wish people realised how different CP is for everybody. And what half a thing is, and how vibrant and talented we are as a community, and we are an un we're an in-top resource.

SPEAKER_01 41:09

Yeah. Absolutely. Like if I've learned anything from the last two and a half weeks, it's the diversity, the vibrancy, the talent, the passion of all these different people I've spoken to, and it's been an absolute privilege to meet new people doing really cool things all across the UK and beyond. So yeah.

SPEAKER_00 41:34

I've enjoyed listening to your podcast as well. It's been really, really professional and entertaining.

SPEAKER_01 41:42

Thank you so much, Rich. And thank you for for joining me today. Thank you so much for pleasure. And thank you for listening to this episode of the Pauline Podcast. Um we've got a couple of days left in March. We're into the last week, but I'll be continuing to release episodes every day for the rest of March. So please like and subscribe and share with people who you think might be interested in this. If you've got CP and you've got people around you who don't really get it and don't really understand maybe send them an episode of this to listen to, it might help them, you know, understand a bit better. Um, but please stay tuned for more episodes between now and the end of March. But for now, it's goodbye from me and goodbye from Brit. Goodbye. Thank you for listening to this episode of the Palsy 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.