The Palsy Podcast - Episode 21 - Karen Watson

As we enter the the latter stages of the month of March, Ciaran is joined on Episode 21 of 'The Palsy Podcast' by Karen Watson. Karen set up the Facebook Group 'Cerebral Palsy Adult Advice UK,' which gives help and support to adults with CP. Karen also speaks about her education and working life. 

Transcript

SPEAKER_00 0:01

Hello and welcome to the Palsy Podcast with me, Kieran Fitzgerald. I'm a playwright, screenwriter, and podcaster from South Wales. And seeing as March is Cerbapalsy Awareness Month to market, I've decided to interview interesting people who have cerebalsy from Wales and beyond every day in March. If you like this episode, please stay tuned for more throughout the month and like and share. Now enjoy this episode of the Palsy Podcast. Hello and welcome to episode 21 of the Palsy Podcast. And me Kieran's Gerald, I'm recording interesting interviews with people who have cyber palsy every day throughout March to mark Cerberpalsey awareness. And thank you for tuning in to this episode of the podcast. I'm delighted to be joined today by Karen Watson. Hi Karen, how's things?

SPEAKER_03 1:16

Hi Karen, I'm fine, thank you.

SPEAKER_00 1:19

Yeah, really good. Thanks. Thank you so much for being my guest uh today. So the first question I've got for you is what was your experience growing up with cyber palsy? And was there a moment where you first felt different to your peers?

SPEAKER_03 1:40

My very early years, well, actually, all my childhood was quite good. And in my early years, I didn't feel any different to anybody else. Um, I've got a really good supportive family, and I'm from a big family, so there was lots of children around, lots of children that I grew up with who just accepted me, obviously accepted me for the way I was, and I don't think they seen me any different either. No, I I started walking when I was three, um, and then by the time I was five, the school that I attended got me walking unaided. So I was able to go and play with the other children and did fall a lot, but nobody ever seemed to bother about that. Just got out and carried on. Um as in in terms of actually realizing I was different, I think that came when we moved house.

SPEAKER_02 2:33

Right.

SPEAKER_03 2:34

And we moved about 10 miles away from where all the family were, and obviously the children that in the local neighborhood that I'd grown up with. I stayed at the same school, so I still had my school friends, yeah. But I didn't have anybody, you know. If I went out to play in the street, they the other children, some of them was they weren't very nice at all. And then I did meet one little girl who she was really accepting of me, and we and we're still friends now. Amazing.

SPEAKER_00 3:07

I I that's something which has come up a lot, having good friends, friends who understand, friends who get it. It's so important, I think.

SPEAKER_03 3:16

It is important, it it changed my life actually because I I do remember looking back now how sad I was. I loved being in school, but coming home from school, coming out of the taxi, and then there was nobody then. Um, but that one friend changed everything because she then showed the other children there's nothing to be afraid of, she's just the same as us, you know. And I ended up with lots of friends, and I am still friends with people from that street.

SPEAKER_00 3:44

So and what was your experience in school? Like, did you go to a mainstream school? What were you good at in school? What did you enjoy?

SPEAKER_03 3:55

I went to um a special need school for children with physical handicaps. It wasn't special educational needs, as such as the the schools that you talk about today, because bearing in mind this was in the 60s, and I'm still actually friends with the um, she was my farm teacher, but she she ended up being the headmistress, and I've had conversations with her in recent years, and she was saying what a special place it was because there there was nothing else like it uh in terms of it, it it meant it meant uh it met all our physical needs, but academically we were pushed, and that was important. I don't think I was pushed as as much as possible as I possibly could because I had no interest in learning whatsoever. No, no, no, I was just there to have fun.

SPEAKER_00 4:52

What did you enjoy in school? What were you good at?

SPEAKER_03 4:57

I enjoyed arts and crafts. Um, I enjoyed PE, even though we had physiotherapy every single day, and we also had hydrotherapy once a week, all right. For for me, all the all the children's needs was different, but for me that what that was my rating. We also had PE, the same as any other school would have PE. And I loved anything, like anything that didn't require me sitting at a desk and reading and writing was good as far as I was concerned. I was quite lazy, and I I was thinking about um the conversation that we were gonna have today. Yeah, um uh about six years ago, I I lost both my parents within a short space of time, and I had to do an enviable task of emptying their house, and I found my school reports, and every single one of them says Karen could do better. Wasn't good, but the school that I attended, I started there at three. Um my mum used to take me at three um for physio and and to get me to um get used to going into the school, and then I started daily at four, and I left when I was 16.

SPEAKER_00 6:13

Wow, so it was quite a long time big period of your life there, yeah, yeah, yeah, yeah.

SPEAKER_02 6:20

In the same building.

SPEAKER_00 6:21

What was it like having been in that environment for so long? Then going out into the big wide world, did you know what you wanted to do, what was available?

SPEAKER_03 6:33

The school um not only taught us academically, it it taught us life skills as well.

SPEAKER_02 6:40

Yeah.

SPEAKER_03 6:40

And in the last year at school, we were taken out, we were put into situations that we were going to meet. We were, I can even remember being taught to apply for things like attendance allowance with an outward pip.

SPEAKER_02 6:52

Yeah.

SPEAKER_03 6:53

Um, we we were encouraged to drive to learn to drive, not not drive at school, but we were taught how to apply for a driving license, where to go to get lessons, all all things like that was all part of of our um school.

SPEAKER_00 7:08

And and that I'm sorry if I make it sound like ancient history, please. Forgive me, I don't think. But were there like adapted cars? Were there adaptations available if you wanted to learn to drive, for example?

SPEAKER_03 7:23

Or the motability scheme was was just started, and there were two cars available. You could have a mini or an escort. There was no choice, no choice other than that. Um and that was an alternative to the old blue Invercar.

SPEAKER_00 7:43

I've seen those.

SPEAKER_03 7:45

You've seen those, yeah. Yeah, yeah, awful things. So, you know, you you could go down that route, but but um mobility allowance had only just come in when I was leaving school, so that was another thing that we was helped through in the process of applying for that. And then when I was 16, I took the decision to go to um what they call vocational training. So I went, I lived in Manchester at the time, and the college that I chose to go to was in Exeter in Devon, so wow, a long way away, a 16-year-old.

SPEAKER_00 8:22

Um would that have been moving away from home for the first time?

SPEAKER_03 8:28

Yeah, moved away from home for the first time. Um I'm sure my parents must have been really nervous about it, but they fully supported um my decision to do that. And I can remember I was there for about two weeks. We had to be there for four weeks before we could go home, and I think that was to make sure that we gave it chances to settle in. Um, and I was there for two weeks, and I came in one lunchtime. I came back to what the quarters where we used to stay, and somebody said to me, There's a gentleman on the phone for you.

SPEAKER_01 9:02

Right.

SPEAKER_03 9:02

So I said, Right, okay. So I went to take this phone call, I had no idea it was gonna be. And it was my headmaster from the school that I went to. Oh he was phoning to ask me to go back to school to because he he'd said to my parents, because I never paid attention in class, I couldn't the at the time you could stay. Sorry, I'm I'm going back and forth. But because it was a special needs school, you didn't have to leave at 16, you could stay on until you were 18 and do your further education. But he said to my parents, I see no point in Karen staying, she'd be wasting her time and our time because she doesn't pay attention.

SPEAKER_00 9:42

And was it was it different in that college because it was something you were interested in, something that you wanted to?

SPEAKER_03 9:49

Yeah, yeah, yeah, absolutely. So he was ringing because my by then my exam results had come through and I'd done really well in my exams. So he was ringing to apologize and asked me to go back, and I said to him, No way. And he said, Well, you're a long way from your family, you know, and we'd love to have you back at school. I said, No, sorry, I'm staying where I am, I love it.

SPEAKER_00 10:09

Yeah, and like at that point, did you have any sense of what you wanted to do as a job? Like what careers were available to you at that point?

SPEAKER_03 10:22

Um, from this this is gonna sound stupid now, but from a very, very early age, the only thing I wanted to do was operate a switchboard. Oh, yeah. Really?

SPEAKER_00 10:33

So like a telephone, sorry, can you explain it?

SPEAKER_03 10:39

They don't even exist anymore, I don't think, but um the telephone exchange basically where all the tele all telephone calls was put through.

SPEAKER_02 10:49

Yeah.

SPEAKER_03 10:49

And as a um a toddler, I had the little plastic one that I used to play with. So I'm going back to a very early age. And then during the the latter years at school, they they fitted um a telephone system in the school in all the classes with a small switchboard for us to practice on. Oh wow. And I used to spend every every lunchtime playing with that thing because I was fascinated by it. I used to ring all the classrooms.

SPEAKER_00 11:19

Was it the thing? You were fascinated by how it worked and what it and that sort of thing.

SPEAKER_03 11:25

Yeah, I was absolutely fascinated by the fact that you could join these two wires together and somebody could speak, you know. Yeah, I was just fascinated. So that was one of the opportunities that the college could allow that, you know, I could train to be a telephonist, and that's all I wanted to be. That's all I wanted to do. So in the the first 12 months at the college, we did um, like for me in the mornings it was things like English, geography, maths, stuff like that, and then in the afternoon we did practical things. So uh what woodwork, um, engineering, wow, typing, operating the switchboard, and then after six months, they decided what what you was best at and which way, which direction you were gonna go in. And after six months, they couldn't decide for me because they said you're really good at everything.

SPEAKER_00 12:22

Wow. And so did you did you get a choice then in what you wanted to do?

SPEAKER_03 12:27

Yeah, they I had to do it, I had to do another tw another six months doing everything. And and even even at the end of that, they still couldn't choose. So they let me choose, and I chose the switchboard, which was it, it was always if that was gonna be my choice, that was what I wanted to do. So then I moved to another part of the college where every single day was just concentrating on you know the operating various switchboards because there was different ones. Um I did further typing courses, I did um shorthand audio typing and stuff like that, so that I could perhaps get a job with um reception and and switchboard operating, which was quite a popular thing at the time. And uh then I added an accountancy course because then I could do hotel reception and do the bills and things like that. But I didn't want to do any of that, I just wanted to operate the switchboard.

SPEAKER_00 13:28

So what did you end up going into as a job? What what jobs uh have you just had one job? Have you had several jobs? What is your kind of work?

SPEAKER_03 13:37

No, I've only I only had two jobs, unfortunately. The my first job when I because I when I left the college, I obviously went back to my parents in Manchester and I managed to get um a job in this in the city centre operating the very switchboard that I was operating at the college.

SPEAKER_02 13:52

Oh, fantastic!

SPEAKER_03 13:53

And the reason I got the job was because I was the only person who went for an interview who had used that switchboard before.

SPEAKER_02 14:00

Wow.

SPEAKER_03 14:01

Yeah, so all all that fact has been awful. Um kind of and that company was only small, but it was a it was a small company within a massive company that was owned by um a company in France, and they were importers and exporters. So I was literally the calls that was coming through my switchboard was all over the world, you know. So it was a really interesting job. Unfortunately, I couldn't speak French. So I if anybody used the call from the district at the regional headquarters, I had to put them through to somebody who could speak French.

SPEAKER_00 14:41

So you would you would get calls from different countries all over the world, that sort of thing. Yeah. Yeah. I bet I bet that was interesting. I bet you learnt a lot about not only the job you were doing, but all different subjects.

SPEAKER_03 14:58

Yeah, it was it was really a really interesting job. I got made redundant, fortunately. The company wasn't doing very well and eventually went into liquidation. But the time I was there, I I did it was really interesting.

SPEAKER_00 15:12

Yeah. And then what did you go on to do after that?

SPEAKER_03 15:18

And then from there, I went to work in the NHS. Right. Um, my local NHS was um advertising for a switchboard operator and receptionist at the district headquarters, not at the hospital. So I went for that and I got it. Um, and then as things progressed, as they have in telecommunication, they didn't want the switchboard there, everybody was going automatic, you know, direct dialing to the extension that you wanted and things. So I was being made redundant again. But because I go on, sorry, I was I think I was at that job for about three years.

SPEAKER_02 16:02

Okay.

SPEAKER_03 16:04

Um, and then I was being made redundant. I I wasn't the only telephonist being made redundant. There was uh ten of us throughout the the authority. Um we were all invited to apply for jobs within the NHS, and I got a job in um HR.

SPEAKER_00 16:23

Okay.

SPEAKER_03 16:24

So it didn't include my telephone skills, but my typing skills came into being there. And I and I had various roles within HR as I moved around, and that was really interesting. Yeah, yeah.

SPEAKER_00 16:37

You see different areas of it and see how something as big as the NHS is put together and how it works.

SPEAKER_03 16:45

Yeah, that's right, yeah, because we we were hiring, I'm firing basically every single position within the NHS, so all the consultants and um you know everybody, every member of staff that joined or left uh our authority came through our department. So that was really interesting. And I think that stood me in good stead to stand up for myself in like later in life now. If I if I know that I need something, or you know, I mean, white coach syndrome is is a thing in people with CP because of all the hospital appointments we've we've gone through as a child. Uh and white coach syndrome is definitely something that I suffer with even now. But knowing how I I've been at interviews with uh doctors and consultants and been on the other side of the fence, and I realize that they're only human beings doing a job.

SPEAKER_00 17:45

Yeah, there's nothing that makes them special or no and at the end of the day, we as people with CP know our own bodies better than our own. And like, how how did you gain that confidence and to be able to advocate for yourself, put yourself first? Was that a journey for you that you had to learn those skills?

SPEAKER_03 18:06

Oh, it's definitely been a journey. Um, but I think it all started when I when I was working in HR at the NHS and and speaking to and and sitting and having my lunch and a coffee with the with the doctors, and thinking, yeah, you know what, they're no different than me, these guys.

SPEAKER_00 18:23

I'm not I'm not saying it that in a disrespectful way, but people people are people, people are people, you know. Yeah, yeah, exactly, yeah, yeah. And like on that note, in terms of um advocacy and being an adult with CP, I think there's a lot of attention put on early intervention, quite rightly, and kids with CP. Like, what mode do you think needs to be done to better understand cyber palsy in adults and then support adults to live successful lives with CP? Big question, I know.

SPEAKER_03 19:04

Sorry, yeah, it is a big question. For me, I I think a big thing and a starting point would be for the NHS to recognize it as a an adult condition and uh and recognize the fact that we need ongoing support because the support, as we all know, uh support drops off, we drop off a cliff, don't we, at 16 or 18, depending on where you live. And then at that age, when you're 16 or 18, when somebody says to you that's it now, you don't need any more help from us. You go up, you you're great, you run out of there, great, brilliant.

SPEAKER_00 19:39

Oh, great, it's fine, I'm fine now. But then uh when certain things creep in, we sort of come up a lot on this podcast of posting parent syndrome. Yeah, and yeah, where do you go for that support? Because there's very little available.

SPEAKER_03 19:57

I think that that's it, that is the problem, isn't it? And I think far too often, and certainly in my case, we leave it too long to go and find that support. Because we keep thinking, CP doesn't get any worse. They told me, they officially told me it doesn't get any so the fact that you know I was having trouble with my feet, that that that's how my problem started. My feet were sore, um, my mobility was declining, I was struggling to buy shoes that was comfortable. I did try to go back to getting orthotics appointments and things like that, and just had doors shut in my face. No, you know, it's not the sort of thing that we can do. You you don't fall into the right category. Um, so you just plod on, and the longer you plod on, the worse things get.

SPEAKER_00 20:48

So, had you been when you were younger, were you adultery and have you become a wheelchair user in in later life?

SPEAKER_03 20:57

Yep. Up until I was about 30, I I was walking unaided. I did have crutches and a wheelchair for outside and for long distance, but for most of the time I I I just walked, and now I'm a full-time power chair user. I can only take a few steps with assistance.

SPEAKER_00 21:21

Is that on on you in terms of not just physically but your mental health? Because I know when I can't do something, it's it can be really frustrating. Is it difficult to deal with that frustration?

SPEAKER_03 21:37

Yeah, it it was very difficult at first. When I when I first had to start using my wheelchair in the house, I had a manual chair, that was really difficult because it is difficult for me to push a manual wheelchair. But trying to do things like the housework and to cook and push yourself at the same time, I was just so frustrated. And then I got a power chair supplied by the NHS. That that was a game changer because I can now like I can carry a tea or a saucepan and move the chair at the same time. Or carry my laundry down to the washing line and hang it out and things like I couldn't do any of that, you know. So yeah, I did but spend a few quite a few years very frustrating. But I'm okay now.

SPEAKER_00 22:25

Good. And and like those might sound like small things to people listening, but the ability to do stuff like that independently, for me at least, means a lot. Means a lot to have that level of independence and it makes you feel good about yourself.

SPEAKER_03 22:41

Absolutely, yeah. I I don't like people doing things. My husband, Chris, he's not disabled, and and and he's fantastic, he will do anything to help me. But I've said to him right from the very start, it's nice that you want to help me, or please don't take away my independence. I need to do things, and and he'll say to me sometimes, yeah, but I can see you struggling. Let me struggle. If I need help, I'll ask for it, but let me struggle.

SPEAKER_00 23:07

I I want to talk about Chris next, actually. But how do you how did you two meet?

SPEAKER_03 23:13

We met through uh love for camping, yeah. Uh yeah, um, and um we have a motorhome. So and we we we were friends for quite a long time before we got together as a couple, and uh we've been together 24 years now. Congratulations.

SPEAKER_00 23:33

Where do you where do you like to go camping and driving? What where do you like to go?

SPEAKER_03 23:40

Uh for most winters for the last 23 years, we've gone down to Spain.

SPEAKER_01 23:48

Oh, lovely.

SPEAKER_03 23:50

Because it's because it's good for me. I I don't like the cold weather. If I if I get too cold, I get really stiff, and that makes things worse. So I I I I'd already retired when Chris and I got together. Chris was still working as a truck driver, and he was really lucky in that his boss used to let him have three months off.

SPEAKER_00 24:11

So you could go down to Spain.

SPEAKER_03 24:14

Yeah, yeah. So he's retired now.

SPEAKER_00 24:16

So I bet I I bet that's a lovely drive all the way down to France.

SPEAKER_03 24:23

Yeah, yeah. And it's great having the motorhome. We've got a a wheelchair accessible motorhome as well now, because uh things have got more difficult for me. But it's great having everything that you need, you know, like there's no worrying that we're gonna get to a hotel and there's gonna be steps, or we're not gonna be able to get in the bathroom, or you know, we haven't got any of our because we've got everything with us.

SPEAKER_00 24:45

And like you talk about an accessible motorhome, what makes the motorhome accessible, whatever you got that you wouldn't have in a normal motorhome then.

SPEAKER_03 24:56

Yeah. The the one that we've got has got um a wheelchair lift on it with a wider door.

SPEAKER_00 25:02

Great.

SPEAKER_03 25:03

So I can I can get into the motorhome with my wheelchair. I can't actually use it in the motorhome because it's not we haven't got the floor space. Oh, but I can I can walk enough to be able to get around and it's got a wet room.

SPEAKER_00 25:17

That that sounds perfect. And your adventures sound like great from Karen, so I hope you can just continue to have those adventures. Um but did you face any barriers in terms of like forming relationships, having relationships, meeting someone? And kind of what would you advise younger disabled people who maybe if you're they know you maybe I'm not gonna meet someone, maybe seeing a non-disabled friend starting, not talking about anyone in particular you've got I I I think the youngsters of today um seem to worry about it more than than I did.

SPEAKER_03 26:09

It's not something that I ever even thought about, you know, it just happened, like I said, I was friends with Chris for quite a long time. Um, and I what I would say to people today is go out and meet people and make friendships and you know, I I I know online dating is a big thing now, it never was when I was younger, but I think for me, more importantly than anything, you need to be friends with the person that you're gonna spend the rest of your life with.

SPEAKER_00 26:41

Absolutely, and have shared interests and shared passions and feel the same way about things. Yeah, I think online dating is a minefield in itself because it apart from the whole disability thing, those conversations do feel a bit not real, but then it's like, do you say you've got CP or do you not? But I'm really happy that you've got a good relationship, and it gives me a bit of hope that that I can meet someone. Yeah, I'm sure you will.

SPEAKER_03 27:18

Do you say to people that you've got CP or do you not?

SPEAKER_00 27:21

If you were friends with them first, it wouldn't be a thing, they wouldn't it wouldn't matter. Yeah. Yeah. And we've touched on it briefly already, but I wanna talk about post-impairment syndrome. How has that affected you? And if there are people out there who think they might be experiencing it, what do you think they should do? Who should they contact with it?

SPEAKER_03 27:51

I would say if you if you feel that there's a decline in in your CP in general, whatever whatever area of your CP, I would go and have a chat with your GP and ask that GP to refer you to somebody, whether that be a neurologist or a physio, depending on what the issue is, but definitely do something about it because I left it too late. And by the time I started seeking help, I had I I saw five different physios who said to me, There's nothing we can do for adults with CP, you just got to get on with it, and and then discharged me. And I kept going back because I knew from my days at school with my daily physio, I knew that physio was what I needed. So I just kept going back and going back. And eventually I I got to see um a physio. She's called Jane, she won't mind me saying that. And uh Jane and I have been working together now for over 15 years, and that's changed completely changed my life. And she always says, I remember the day you came in here, I could see you was in so much pain, and I needed to help you. And she's kept me on the books, she's she's kept my file open. I don't see her regularly. Sometimes I don't see her for a year or more, but I know that I can just drop her an email and say, Jane, I need such and such a thing. She'll fit me in, and I'll go and see her and we'll sort it out, and and that continuity with having that same person who understands me. And and not having to explain everything all over again to new every time. Yeah, that's been so important, and and and I just wish that that kind of um treatment not even a treatment plan, is it? It's that should be available to all of us. We should we should all have a Jane in our life.

SPEAKER_00 29:43

I think so. So would you advise people to go and talk to their GPs, seeing what's available, seeing what support is there?

SPEAKER_03 29:53

I would say go and talk to your GP, and if your GP tells you it's just your CP, say no, it's not just my CP. I need to see somebody about this.

SPEAKER_00 30:02

Um not to be afraid to get second opinions as well, I suppose.

SPEAKER_03 30:08

Exactly, yeah, yeah. Yeah. I think we we know ourselves better than anybody, don't we? And you've just got to you've just got to have the confidence to to say that.

SPEAKER_00 30:21

And you stand up, advocate for yourself. Um you said stand up for yourself, which maybe isn't the best metaphor at this point, but I'm sorry. That wasn't an attention. I know what you mean. So you started a group on Facebook called CP Adult Advice UK. So, how did you come to set up that group?

SPEAKER_03 30:49

Uh in 2017, I got talking to um a young lady, Kirsty, on another CP group, and she was seeking support, um, desperate for advice and and what have you. And I was trying to help her from my own experience, and we got talking, uh, and we we were saying there's nothing for adults. So we decided to start something for adults, and then you know, the the group did take off. I think we had about four or five hundred members for quite quite some time, and then we went into lockdown, right? And the group really took off then. That that is when it really came into its own because I was working with Richard Luke from Scope to try and figure out um where CP came within all the like the vaccine program and things like that. And so we were working together and we were advising people on on you know, if the vaccines come in, you need to do this, or yeah. And then we started having a weekly Zoom to you know, so for people who was feeling so isolated.

SPEAKER_00 31:58

And it's just like a social thing for people to meet other adults and CP.

SPEAKER_03 32:04

Yeah, yeah, yeah. We'd we just have a chat, just you know, it's just a friendly Natter. It's we always say it's like a night in the pub. Bring a drink if you want to, or a coffee, and we just sit and have a chat, and we do that every week, we still do that every week. And um we've now got over 1,800 members, and we are apparently the largest peer-to-peer support group of its kind in the UK.

SPEAKER_00 32:30

That's fantastic, that's a big achievement. And what what sort of support do you give your members and and what what can people use this, you know, service for, I guess?

SPEAKER_03 32:44

They they more or less support each other, to be honest. You know, they they somebody will post a question and and we we do monitor it and make sure that everybody's question is answered and and we do monitor the answers as well. But basically they they the members are fantastic at look looking after and supporting each other. It is it amazes me.

SPEAKER_00 33:08

It's fantastic, I think, when when those people get it, like we've spoken about before, when you don't have to explain it, when people get it and they've got solutions maybe that you wouldn't have thought of I think that makes a huge difference.

SPEAKER_03 33:26

Yeah, exactly. Yeah.

SPEAKER_00 33:31

And do you think there are like certain misconceptions that people have about CP and Yeah, what what do you think maybe needs to be done to change those attitude?

SPEAKER_03 33:49

I I think raising awareness of cerebral palsy is a fantastic thing. It's um certainly in the years that I've been around because I was born in the 60s, uh it it wasn't it wasn't something that even I owned up to having.

SPEAKER_00 34:06

Right.

SPEAKER_03 34:07

Because my diagnosis is spastic, cerebral palsy. You know, I mean the spastic and spas it was a a dirty word for for many, many years. So it was something that wasn't talked about. And I think the fact that we are talking about cerebral palsy now in the open, we are trying to raise awareness. We are saying, look, no, we're adults and we're still here. It's not just the children's condition. Um and and I and I also think it's really, really, really important to get the message across that you your arms and legs might not work, but your mind still does. You know, I I I have people talking to me as if I'm funnily enough, not so much now I'm older. You know, I'm I'm a broken pension age now, and it's more acceptable that I'm I'm in a wheelchair for other reasons. But as a young person in a wheelchair, I was often spoken to as if I was a child.

SPEAKER_00 35:06

And that is so, and the other thing that I get is people talking to the person that you're with. Oh, yeah, to you, and that can get so frustrating, and it sounds simple, but just talk to us. Talk to us.

SPEAKER_03 35:21

It's rude, it is rude, you know. And I I can remember one day I was in Tesco's and I asked for a cooked chicken, and the lady put the chicken in. She heard me, she put the chicken in the bag and she gave it to Chris. And Chris Chris just stood and looked at him, wouldn't take the chicken. And she says to him, Is it a chicken? He said, I didn't ask for a chicken, my wife did. And the woman was embarrassed. I was embarrassed.

SPEAKER_00 35:52

But but it's so important to to like have allies to have people who are in your corner.

SPEAKER_03 36:00

Yeah, definitely. Yeah, yeah. And and I I always think, you know, yeah, I was embarrassed at the time, but he was right to do what he did. He was annoyed, and hopefully that lady will never do that again.

SPEAKER_00 36:13

Hopefully, if even if it's changed her way of thinking a little bit, I think it's a really good thing. Um, even though it must have been awful to experience. But but but I think almost when you get those experiences of people talking down to you, sadly you almost get used to it, you get desensitized to it, so you don't feel that anger every time. It's like, oh yeah, that happened because it always happens. Exactly. Yeah, sorry, go on.

SPEAKER_03 36:47

Sorry, I was gonna say, yeah, I interrupted you, but I was gonna say, yeah, I think we're far too accepting.

SPEAKER_00 36:54

We can be more full-side and saying no, that's not how you should talk to me. Yeah, I agree. Yeah. My last question, Carion, is what is one thing that you wish people knew about cereal palsy?

SPEAKER_03 37:12

This is something that really always gets me. Um I talk to quite a few people about cerebral palsy now, I know, and I'm involved in several research projects and things. But the one thing that I always say when people ask me this question is if somebody is non-verbal or has a speech impairment, please don't assume that they've got no understanding because that that happens so often. You know, I I've got people who use AAC machines, friends who use AAC machines. I've got a friend that I was in school with who was non-verbal, and even the staff at school just assumed that she had no understanding, and she definitely did.

SPEAKER_00 37:58

Yeah, uh she's so infuriating, like but not just for the people who are experiencing it, but like not feel supported. And what I would say, I completely agree with you is like talk to everyone as you would want to be spoken to, which might sound really simple, but it's true and it works. And if if that person does have a learned disability cognitive impairment, it doesn't mean you can't have a conversation issue with them, it doesn't mean that you can't engage in society. Um you know if you're passionate about as well. Thank you so much for your time today, Karen. I've really enjoyed it.

SPEAKER_03 38:44

Thank you for having me on your podcast. I've really enjoyed it as well. And I really enjoyed the other podcasts that you've done, and I can't wait to catch up on the ones I've missed.

SPEAKER_00 38:53

Thank you so much, and do let me know what you think. I'd love to hear any feedback from you, Karen, and from anyone who's listening. Maybe a feedback or questions that I could put to some of our guests. Please do feel free to get in touch on social media. And Karen, I'm sure if you don't mind sharing, I'll share this to the South Paul's Adult Advice UK group as well.

SPEAKER_03 39:17

So absolutely. Yeah, yeah. Thank you for everything that you're doing to raise awareness, Karen. Fantastic.

SPEAKER_00 39:23

I'm really enjoying it, thank you. That's just about it for this episode of the Pulse Podcast. Thank you for to Karen for joining me, and please tune in for the next episode of the Falsey Podcast. But for now, it's goodbye from me and goodbye from Karen. Goodbye. Thank you. Bye-bye. 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 my thank you.