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Tony Mantor: Why Not Me ?
Jason Moyle: Tuning into Triumph and his journey with Cerebral Palsy in the U.K.
00:27:06
In this episode Jason Moyle shares his powerful life story of living with cerebral palsy. Jason discusses the challenges he faced since birth, including being born prematurely and struggling with mobility. He also talks about his experiences with bullying during school and how his parents supported him through groundbreaking operations. As an adult, Jason has excelled in his career, working at several jobs including as a presenter at CHBN Radio, and as a comedy writer. He emphasizes the importance of mental strength, perseverance, and community involvement, despite the physical and emotional hurdles brought on by cerebral palsy. Jason also highlights the need for greater empathy and understanding from society towards individuals with disabilities
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- [00:01]
A
Happy Holidays. Want to give your host a gift? Consider subscribing, rating and reviewing the show this holiday season. It really helps the show grow. From all of us at Believe, have a Merry Christmas, everyone, and a happy holiday.
- [00:26]
Welcome to why Not Me? Embracing Autism and Mental Health Worldwide. Hosted by Tony Mantour, broadcasting from the heart of Music City, usa, Nashville, Tennessee. Join us as our guests share their raw, powerful stories. Some will spark laughter, others will move you to tears. These real life journeys inspire, connect and remind you that you're never alone. We're igniting a global movement to empower everyone to make a lasting difference by fostering deep awareness, unwavering acceptance and profound understanding of autism and mental health. Tune in, be inspired and join us in transforming the world one story at a time.
- [01:22]
Hi, I'm Tony Mantour. Welcome to why Not Me Embracing Autism and Mental Health Worldwide. Joining us today is Jason Moyle, a truly inspiring individual whose life embodies courage and determination. Living with cerebral palsy, Jason has faced unique challenges with remarkable strength, transforming obstacles into opportunities to uplift others. Known for his vibrant presence as a presenter at CHBN Radio, his journey extends far beyond the airwaves, reflecting a profound story of self discovery, perseverance and an unwavering spirit. He has a tremendous amount of information and we are just very happy to have him here with us today. So before we dive into our episode, we'll be back with an uninterrupted show right after a word from our sponsors. Thanks for coming on.
- [02:15]
B
Thank you very much, Tony.
- [02:16]
A
Oh, it's my pleasure. Let's start out with what you are doing currently.
- [02:22]
B
Okay. Well, basically I have. I've got three kind of jobs. I work at civil servant mainly at Red Roof, but I also do a community radio station in Truro called chbn. Also help out with Steve Osborne and Livewire. But also I write comedy as well. Now I'm doing a comedy master's degree.
- [02:43]
A
Wow, that's great. Can you give us a little more information on the community work that you do?
- [02:48]
B
So the community work entails presenting on the radio, giving out information to the community, going out to visit the community and do events within the Truro and surrounding areas as well. We're based inside a hospital as well, so we do a lot of hospital related health well being work.
- [03:06]
A
Now it's my understanding that you have been diagnosed with cerebral palsy, is that correct?
- [03:13]
B
That's correct, yeah.
- [03:14]
A
Everyone's journey with cerebral palsy can be quite different. Can you share with us the how your diagnosis came about and what your experience Was right.
- [03:23]
B
So. So when I was. Well, I can't remember this because this is. It is when I was born, but I was born, I think about 12 weeks premature, something like that. I was quite early between 12 and eight weeks, so don't quote me on that, but I was premature anyway and what happened was I was given birth to in the north to be roughed down to Lesk Hospital and I nearly didn't survive it. They registered my birth about a month or so after I was born. I was in hospital for six weeks. So the diagnosis of cerebral palsy wasn't straight away. They kind of realized there was something wrong when I wasn't starting to walk when I should be, I was crawling and doing all sorts of things but I couldn't actually get up and walk and they kind of worked out that there was something wrong then. Bear in mind this is back in the 70s where the medical situation wasn't quite as advanced as it is now.
- [04:17]
A
Yes, that totally makes sense. What was it like for you growing up with cerebral palsy? How did it shape your experience as a child and then of course as a teenager?
- [04:29]
B
So when I was very young, I was in an out of hospital. I had an operation when I was very young. My parents were kind of very strong to push me forward and make sure I had the best of everything, including an operation that was just groundbreaking at the time. So they said they couldn't do anything for me. My walking was, was non existent and one consultant said, no, I can't, you know, he can't walk and my mum wouldn't pay. That's an answer. So we ended up having another consultant who looked at me and said, look, there's another operation we can do now. It's very, very new, which involves breaking the tendons in your foot and then you have to start to try and walk over again. So my first few years in the answer to your question, I was very much insular. There wasn't. I didn't have many people around me apart from my parents. I went to primary school at Garrans. That was interesting because they didn't all accept me. I was a bit of a novelty. I used to walk with a limp, quite a pronounced limp. My one leg is about half an inch shorter than the other.
- [05:30]
A
Did that create any problems for you at school?
- [05:34]
B
Yes, I did get picked on a bit when I was younger and that kind of went throughout the whole of my schooling life really got picked on them and otherwise did as well because people, children did not easily accept someone who's different. Maybe that's changing in the way that people look at, look at disabilities now. And there is a lot of improvement in that area. But back in the 70s and early 80s there was, you know, the acceptance of someone who was a little bit different was not there.
- [06:05]
A
I think things hopefully are getting better now. So how did that affect you during your teen years?
- [06:13]
B
My teen years, so I went from primary school and then I didn't stay in primary school for more than one term or one year. My parents basically were called for a meeting because I was treated differently and because I was a bit other parents and other teachers didn't know how to read, you know, how to deal with me because I was, I was still a very bubbly child but also, you know, had my issues with my cerebral palsy and everything else. So they wanted to put me in a class with other people of like educatedly who were probably a bit less well educated as it were. So my parents said, no, we're not having this, so we're going to take them away and put them into a private school. So I ended up going to a private school, took the entrance exam and spent few years at Truro Cathedral School and then went off onto Truro School. So answer to your question again, my teenage years, I was bullied a lot in Truro School. Truro Cathedral School, not so much. Probably last year I was bullied a bit there, but Truro School, there was a lot of people that didn't accept or found it difficult to accept my disability. And of course the problem is when you'll get bullied a lot, your mood changes and you become more. You change your personality as well, which I felt that happened to me during my teen years.
- [07:34]
A
So can you give us a little more information on how changed, what type of personality were you and then what did you become?
- [07:43]
B
So. So my personality is that I am now basically is quite mild, you know, outgoing, bubbly, you know, I will talk to anyone type thing. But I was like that in Truro Cathedral School to a long period of time. But I think I was trying to deal with disability in general, about my limitations. I love cricket and that was my big thing with cricket and still is. And I wanted to prove that I could play cricket like the rest of my peers, which I couldn't do because of my, my, my disability. Although I was good at cricket, that good level. So again, I was struggling with my own identity at times. And so I think what happened with the bullying, it made me go more insular and probably more aggressive too. It Made me more short tempered.
- [08:34]
A
That makes total sense and it is completely understandable why you would feel that way. Cerebral palsy can look very different from person to person. Some people experience more physical challenges while others may have intellectual or additional disabilities alongside it. In your case, did you experience anything beyond the physical aspects of it or anything that might have mimicked those challenges that you see with other people?
- [09:03]
B
So brain wise I was, I was lucky. It didn't affect me as much. That's why I had a reasonable education.
- [09:13]
Is mainly my body and my left side, left weakness. All my left side is weaker than my right side, for instance. Yeah, I count myself very lucky compared to other people with cerebral palsy because as you said, there's different types of cerebral palsy. There's different parts of the brain that could be affected. People could be, could walk much better than me possibly, but then be affected in different ways. And there are people who can't walk at all and are in wheelchairs and obviously that's where I am now. But that's not where I was when I was young because my body was reasonably young and I could cope with doing sports and things like that. But not so much now.
- [09:52]
A
Many people with cerebral palsy will connect with organizations or charities that support the community in different ways. Have you been involved with any groups or causes that are meaningful to you?
- [10:05]
B
No, I, I haven't. I, I have supported them. I support, I support Scope, but that's more a money kind of thing. I support that and financially I would like to get more involved with charities with cerebral palsy. Yeah, I would. It's difficult because I, because I'm quite busy doing lots of different things. I think I probably have given up all the time I've got at the moment. But when, maybe next year when I kind of possibly leave my main job, I may be looking at doing something with cerebral palsy teritis as well.
- [10:37]
A
Living with cerebral palsy can sometimes feel easier when there's a sense of community. Have you connected with others who also have cerebral palsy? Maybe as a mentor, peer or a friend? Have you been able to share advice or support people in navigating their daily challenges?
- [10:55]
B
I meet people with cerebral palsy all the time in my daily life, whether it be work colleagues or members of the public. The manager of chbn, a committee radio station that I work for, also has cerebral palsy and also has similar thought but different kind of situations than I do because he's, as I said, all, all cerebral palsy is different. But yeah, I do try and pass on some information and advice to people who've got cerebral palsy. I don't do that very often to the point, because each sperm with cerebral palsy has got their own things to deal with. So what I deal with might not be what someone else deals with, the cerebral palsy, because it is. It's kind of unique. It's like two or three different jigsaw puzzles. You know, they may look very similar. The pieces don't always fit the same way.
- [11:47]
A
Yes. Putting it that way, it just makes so much sense. Now that you're so involved in community projects and often in front of people who may not face the same challenges you do, do you find that they give you feedback or show support because of what you've had to overcome?
- [12:06]
B
Yeah, I think people respect what I do and how I've achieved what I've achieved over the period of time. And what I do now, I probably get that more in my main job than I do in my community. They do job. But I think I do get people coming up to me and saying, oh, I. Yeah, think what you do is amazing. But again, I don't look at it that way. What I see is I do what I do to go around and live my own life, you know, and I always push myself to achieve more and more because it's important to do that.
- [12:38]
A
Absolutely. I think that is just an awesome way to look at life. So, looking back, how do you feel that you've changed from your high school days to where you are now? In what way have your experiences shaped how you see the world, how you've handled the challenges, and then on your outlook on how your life is today?
- [13:05]
B
Right. Well, I've definitely got karma. I've got. Definitely got a lot better at dealing with life. I've always. When I was growing up, I was always a bit bitter, a bit angry about why it was. Why. Why me? Is it, you know, why has it happened to me? You know, I want to play sport. Why can't I play sport to the level I want to play it? But now I think, you know, I said this to someone else the other day. I think at my age now, I've actually come to terms with my situation, my life as it is now, and. And I know that I'm happy in my own body. I know that I. I can push myself to a certain level, but, you know, I know not to push it too hard, but I think I've calmed down. I think I'm a lot more vaccinable than I was probably in my twenties. And my teens.
- [13:55]
A
Yeah, I'm hoping I can say the same thing, that I'm a little calmer than I was in my 20s. When people think about bullying, they often picture it as something physical, but it can also be very verbal and emotionally challenging. Have there been times in your life where you faced those kinds of challenges not just because of how people saw you physically, but also in the way they treated or respected you as a person?
- [14:22]
B
So during the school, I got physically bullied a lot, and I used to come home with bruises all over my legs and arms. My parents had to go to the school a few times and just. It didn't improve, to be fair on that. And the mental side of the bullying, with the name calling, that kind of. When you were younger, that kind of hurt more. But now it doesn't. What I find now is I find people patronizing. That's my trigger now. When people. When people look at you and patronize you and they think they're doing the right thing, they talk down to you and they kind of shout at you and say, oh, you. And I'm like, you don't need to shout. You don't need to be kind of condescending. I can understand what you're saying. I may be in a wheelchair, but I can understand this, you know?
- [15:09]
A
Yes, I get that. Can you tell me how you get around now? Are you able to walk on your own or do you have to use a wheelchair?
- [15:15]
B
So at home, I walk around. I kind of wall walk. I know my house quite well, and I do walk around the house. I think after Covid, or during COVID and before COVID my mobility was getting worse. And I think around that 20, 20 time when everyone was, like, locked into the house and my walking, obviously I didn't do much walking then apart from walking around the house, and I think it got worse then as well. So the arthritis and everything else is part of the cerebral palsy. The knee gets affected because of the amount of walking I've done over the. Over the years. And also I had a back operation 10 years ago, which obviously corrected things for a while, but it's come back again a bit now.
- [15:58]
A
Is the back issue related to the cerebral palsy, or is that just something completely different?
- [16:05]
B
Yeah, so the back is related. It's all interconnected. So the way I've walked all my life, it was always a jerky movement. And I always walk quite quickly because the momentum was there when I was walking. And that is probably why I don't walk so much now, because I Can't walk that quickly. I haven't got momentum. And the problem was that that kind of affects the back, especially the upper back and the neck area. So I had a curvature of the spine and it was compressing into my. Onto my nerves. And that's when I had had an operation about 17, 17 years ago now.
- [16:40]
A
Okay, now what about medications? Do you have to take any medications because of the cerebral palsy?
- [16:47]
B
No, I try and avoid medication if I can help it. So at the moment I'm on no medication. Obviously I need medication. If the doctor gives me medication, I'll take it. But at the moment I take no medication. I don't need it.
- [16:58]
A
That's great. As long as you can stay off the medication, I think that's the best thing you can do. Now, what about pain? Do you have any pain associated with it at all?
- [17:07]
B
The thing is, when you live with what I've lived with so long, what I consider pain is probably, you know, yes, I do get the odd painful moments and things that I can get at, but I kind of just live with that because that's what I've lived with.
- [17:23]
A
Yeah. So it's kind of like you have a certain threshold of pain that you deal with on a daily basis or a consistent basis, yet when it gets worse than that, you need something that then you know that the pain is unbearable and you gotta do something about it.
- [17:38]
B
Yeah. I have got to the point at some points where I had to go to the doctors and they suggested painkillers and they suggested aspirin and that type of thing. At the moment, my pain threshold is, you know, as it is. So if anything gets worse, then I obviously will do something about it. But it's okay at the moment.
- [17:57]
A
Well, I think that's just great that you're not having any extreme pain right now. So it seems like you've handled it quite well.
- [18:04]
B
Spitey Spidey.
- [18:06]
A
Now that you've lived with cerebral palsy for some time, you've reached a place of acceptance, you're calmer. What does a typical day look like for you? Are you working, spending time with people? How do you balance daily life while managing the challenges that come to you every day?
- [18:23]
B
So my day to day, I've been at home all day. I work three days a week as a civil servant, so I travel to Red Roof three days a week. So I have a lot of social interaction with my work colleagues. Weeks and with customers. And I enjoy that. And I am thinking about finishing that next year. Haven't completely decided yet, but it depends on how my final assignments go with my writing because I might want to just to carry on with my writing. My only concern with that is that obviously I'll have less interaction. So three days a week I'm in Red Roof, get home, have tea. I do go to the studio occasionally, but I normally do radio from home. So I kind of, I kind of have interactions. I've been away, go off and watch cricket and do things like that. So I go off on the trains a lot. That's entertaining at times, especially when you've got to rely on people helping you and assisting you around, which is not always, but always the case.
- [19:18]
A
I'm sure it is. I think you just brought up a good point. People that know you, people that have worked with you, they have come to accept you because of getting to know you. They accept you because you are you.
- [19:32]
B
Yes.
- [19:33]
A
What about people that don't know you? When you go into a train or you go into a public place, what's the interaction like there? Because you might have a problem getting from point A to point B because you're wheelchair, do people step up and help you or do they just stand back? What's your take on how they react to you?
- [19:53]
B
Well, I'll give it, give you a couple of examples. So I went to Southampton, not this time, the time before. And I was well off the train, didn't get a pre booked taxi, went off for the taxi rank and went to the first taxi and I said, oh, I'm going to this hotel, my wheelchair folds, it'll go in the back. No, I can't do that. I said, well why can't you do that? Well, no, you need a, you need a wheelchair accessible taxi. I said, no, I don't. I said this one folds and sits in the back of your car. I can sit in the front. So he refused. The next one after him refused. And then I spent five, ten minutes going up and down the taxi rank. The actual wheelchair accessible taxi had no one in it. The driver wasn't in there. So eventually when, when he came back and they get rid of the frontal light, I had to go into that. But at that point I said to the taxi driver and said, no, I still want you to put a wheelchair in the back and I'll sit at the front because that's more comfortable for me. I found when I was in London when I had to go taxis almost side on, I had to go inside on because no way of like manoeuvring, you can't face the front you have to go up a ramp. And the problem is with roads in London, or any roads, there's always jobs. And I felt that put my back out quite badly when I went to London in May. So I didn't want to have a repeater there. So a lot of people just don't understand and don't want to accept the fact what you're saying to them is saying, I think it's mainly because the wheelchair is 25kg. It's heavy, but is about the size of a big suitcase and it folds. You know, a lot of people will back away from that and say, no, no, no, no, it's someone else's problem.
- [21:30]
A
Do you experience any issues with your arms, such as muscle problems, or is it primarily your legs that make it difficult for you to get around?
- [21:37]
B
So my left arm, my left hand is like a claw. Can't really grab much. You can grab a few things, but I couldn't carry a cup of coffee in the left hand properly. My left arm is weaker than my right arm. There's less muscle density in my left arm and my left leg than there is in my right arm and right leg, because that's the way I was, you know, that's how it worked when I was growing up. Because my left side was weaker, it grew weaker as well.
- [22:03]
A
Do the doctors suggest any physical therapy or anything like that to help strengthen your arms and legs back up.
- [22:10]
B
I have had physiotherapy throughout the years, and I'll be honest with you, Tony, when it comes to physiotherapy, I have been lazy in the past. Unless someone's actually doing it with me that was actually getting me to do it. It's one of those things that I do it for a while and I think, oh, no, I don't want to do this anymore. That's my regret, really. I haven't done enough to strengthen my arms legs because I could have done more. But, yes, it was when I was younger, my parents used to do physiotherapy with me. I used to have to weave a ball in my right and my left arm, you know, left hand, give my strength. My left hand won't turn around. It will only go as far as, yeah, it won't turn around. So it's always got. I'm always looking at the back of my hand. I never can look at the front of my hand.
- [22:56]
A
So what do you see for the future? What are your plans? Does cerebral palsy have things that you have to worry about for the future or do things pretty much stay the same.
- [23:07]
B
I'll cerebral palsy won't necessarily get worse. The actual conditions have palsy. It's all the things that relate to it. So because my body, you know, I'm in my 50s now, but my body probably is in its 70s. You know, it's been through a lot. It's not been through a normal 50 year old body in a lifespan. It's been through a lot of falling over. I haven't mentioned that, but I used to fall over a lot when I fell over a lot. I could get myself up when I was younger. I can't get myself up now. So it does invol, you know. And of course if you're falling over a lot, you're putting a lot of strain on your back, your body and everything else.
- [23:47]
A
Yeah, you have to be very careful when you fall. You can break an arm, you can break a leg, you can break a hip. That's something that you have to be very, very cautious about.
- [23:56]
B
Yeah, well, I've been fortunate. I'm tucked in wood when I say I've been fortunate because luckily from an early age, because I fall so often, my brain, I think, has gone into like a safety mode where it relaxes my body straight away. If I know I'm going down, I will go down. And people think, oh, he's gone down very heavy. Well, that's because my body is relaxed and I've gone down like a sack of spuds, you know, so it means that I haven't necessarily injuring myself. But then I said, as you get older, your bones are not quite as resistant to be like bounced back. So the possibility is that's why I try to avoid falling over if I can, as anyone would.
- [24:34]
A
Absolutely. What do you feel is important for the listeners to hear and understand about cerebral palsy? What message would you like to convey to help others better grasp the daily challenges and experiences so they can better understand the realities that you have to live with?
- [24:54]
B
Okay, well, when I walked more when I went to cricket and I was walking rather than a wheelchair, a lot of people saw me and thought I was drunk because the way I walked and my walk was quite staggered sometimes, especially when you get tired. And I think that people kind of look at someone say, oh, they're drunk or they're this and they're that, but they need to like, I think, think twice about whether someone's actually drunk or whether someone's actually got a disability or a health condition. I remember one person at cricket when I was in the wheelchair. And he kept me on the shoulder. It was raining outside. He goes, oh, are you all right? Because you've got a chair already, haven't you, mate? If the small. And I turned around to him and I didn't know really what to say because if I was quick enough, I would have said something like, well, do you want this chair? Or something? They need to understand that people in wheelchairs or people who've got these disabilities have struggles a lot of time that they don't have to deal with and other people don't have to deal with. They. Most people deal with their own difficulties and what they want is a bit more empathy, I think, and a bit more understanding. And as you said, do your research, do a bit of learning. Because everyone's different. You know, the people use the word normal a lot. It's normal. This is normal. Everyone is normal. People are different. Their normal is different. So if everyone has the impression that everyone is normal, that's where your benchmark is. You treat people as normal and you treat them as what they need to have. Because sometimes they need support and sometimes they don't. Some people rush to my support and I say, no, no, no, I'm all right. I'm very independent in that way.
- [26:29]
A
Sure, that's great and I'm glad you are. Well, this has been great, great information, great conversation. I really appreciate you taking the time to join us today.
- [26:40]
B
Thank you very much, Tony.
- [26:41]
A
Oh, the pleasure's all mine. Thanks again.
- [26:49]
Thanks for taking time out of your busy schedule to listen to our show today. We hope you enjoyed it as much as we enjoyed bringing it to you. If you know someone who has a story to share, tell them to contact us at WhyNotMe World. One last thing, spread the word about why not me. Our conversations are inspiring guests that show you are not alone in this world.
- [27:26]
If you like the show, please take a moment to rate, review and subscribe. It really does help the show to grow. Thank you for listening.
- [27:41]
Happy holidays. Want to give your host a gift? Consider subscribing, rating and reviewing the show this holiday season. It really helps the show to grow from all of us at Believe. Have a merry Christmas, everyone, and a happy holiday.