The Palsy Podcast
To mark Cerebral Palsy Awareness Month, Award Winning Screenwriter and Playwright Ciaran Fitzgerald interviews interesting people who have Cerebral Palsy, hearing their stories of the joys, triumphs and tribulations of living with Cerebral Palsy
The Palsy Podcast
The Palsy Podcast - Episode 29 - Matt Stabb
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Ciaran is joined on Episode 29 of The Palsy Podcast by Matt Stabb. Matt is an author and disability advocate, who has worked as a Peer link worker for Wiltshire Council, supporting disabled people to better live independently. He has also written his autobiography 'Keep On Keeping On' about living with Cerebral Palsy, which is available now.
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 Cerberus 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 29 of the Pulsy Podcast with me, Q and Fitz Gerald. So if you're new to the podcast, the Palsy Podcast is a podcast that I'm making every day in March interviewing interesting people who have CPA to mark sober palsy awareness months. And we're getting to the end of March now. We've got three of these left to come in the next few days, but I'm delighted to still have really interesting people coming on, one of whom is Matt Stab. Hi Matt, how you doing mate?
SPEAKER_00I'm good, I'm good, mate. I'm really good, thank you, mate.
SPEAKER_01We're just talking another voice about the recording about this point. Oh boy, does this play off to a bit last now? So Matt and I may be a bit deflated today recording.
SPEAKER_00Don't don't like I can't even think about it anymore. It's just yeah, yeah.
SPEAKER_01But I'm I'm not we're not gonna talk about that anymore. What I am going to ask you first is what was it like growing up with sous heat and what were your kind of early childhood experiences like?
SPEAKER_00Well, I'm I'm uh I'm an old git now, I'm 55, so for me growing up with CP was um was interesting um because I went through the special ed system, special education system. So I was at one school for 11 years of my life. Um it was a boarding school. Um and from the age of five to 16 I was there um because my mum was um advised to leave Cornwall um to get give me a better chance to thrive really. So boarding school for me at the beginning was quite interesting. Um we'll come on to this later because it's all in my book, which I know will come on later. Um so it was it was quite tough looking back and quite archaic for my the first years of my my life uh school life. Um there's a lot of stuff that happened to me that wouldn't happen today, obviously in the school system. Um, but as I got older towards leaving age, it got better. So basically, Kieran, the younger part of me struggled. I cried a lot, there was a lot of tears. Um I went home every other weekend to see my parents and school holidays and my parents and siblings. Um the treatments at school, physiotherapy were very archaic, you wouldn't see it seeing them being done now.
SPEAKER_01Was it very kind of medical model, very kind of corrective and very sort of do you know what I mean?
SPEAKER_00That's an interesting point because no one's ever asked me the question like that before. So I think it was very medical model. Um and we were the special scholar when he was down in Devon, and it was an internationally recognized school. Um so we had a lot of people from Africa, Lebanon, New Zealand. So yeah, it was, but yeah, that's a good point. It was medically medical model, I think. But if you think back to those that you weren't even born, then I I appreciate that. But that's what we that's all we went, that's what we had was a medical model, and school school structure itself was I wasn't pushed enough in my personal opinion. I left school with one CSE, so I've never been academically brilliant, but I've I've I've achieved a lot more later on in life.
SPEAKER_01And I'm gonna I'm guessing that your family wouldn't have had the option to send you to mainstream school like that, wouldn't have been available. Um do you think you would have benefited from mainstream education if it was available?
SPEAKER_00This is this adopted mean ask to me. Um part of me thinks yes, but the other part of me thinks not necessarily, because as you know yourself, some disabled people are segregated within the mainstream school, and and a majority of kids. I I can't speak for the kids, but I should imagine there would there would be a lot more bullying going on. Um so part of me thinks, like I said, part of me thinks yes, and part of me thinks no. The academic side, yes, I would have I would have loved to be a bit more academic, but as well, I think that's down to me, but I wasn't given the choice.
SPEAKER_01Yeah, if you had more choices, more yeah, knowledge or opportunities were available, yeah.
SPEAKER_00Because we're talking, I went to school in my 76, so I was five.
SPEAKER_01Like so that's yeah, and then the the transition into going to college, so you went to Herowood.
SPEAKER_00Oh yeah, what was that? Like that that was one of the best three years of my life because as you can imagine, being away from home, not being told no, not to be in to like, and that's where I started to find out about life. So hero would really did have a massive positive impact on me as well. I learned how to be a student, and what actually interestingly, my mum says that it did me the world of good, but my dad's got a different opinion. Oh so he thing. Um he always thought that I could have done more than I did. I was too busy being a student.
SPEAKER_01Did you enjoy kind of the partying side of it drinking more so than the actual educational side of it?
SPEAKER_00I'll be honest, you might have spoken to other people on your various podcasts. You've done this work, but yeah, partying to me was was was the best, and going to gigs as well. What kind of music were you into? What kind of gigs were you doing? Back then it was uh I listened to a lot of metal and a lot of alternative stuff, like the cure and uh you made it and H E D C and all that. So yeah, yeah.
SPEAKER_01And how how accessible were those gigs?
SPEAKER_00How did you manage like um well actually the NEC because the NEC did all it as you know held in commentary? So yeah, we weren't we weren't far from the NEC, so even back then it was quite accessible, so yeah, there was race platforms and stuff like that. So yeah.
SPEAKER_01Did you ever get involved in any mosh bits, Matt?
SPEAKER_00Right, not not in my younger years, but ironically, I am in my older years. Does that make sense?
SPEAKER_01Yeah, yeah, that may sound totally bizarre, but uh but yeah, it was it was it was good and um then kind of leaving college wanting presumably to find a job, like how what were those challenges of that you and going out into the the big world, I suppose.
SPEAKER_00During to be honest, I uh I I left college with no no prospects really. Um so I again, although everyone was really good, no one sat down with me and gave me any career advice. So for me, I mean skipping on a few years, I wasn't I was 35 when I first got my first pay job. So there was no encouragement, no, no, no, no, like Matt, if you thought about this or if you thought about this career, not like a lot of disabled people today, you know what I mean? I think although it can be very feel very negative at times at the moment when it comes to disability, yeah. We we have come a we have come a long way to where we were.
SPEAKER_01And did you did you feel that you didn't have much support in terms of finding employment or knowing what was out there and knowing what was available?
SPEAKER_00Yeah, that's exactly it. But also, Kira, I was happy with my lot because I uh this may sound weird, but I was just your disabled person that just likes um his lot at the time. Like I did obviously, I did a few voluntary jobs, yeah, which don't get me wrong, voluntary is fine, but it wasn't until later on in life that I met Jeanette and realized I had to get some paid employment because the benefit the benefits would stop.
SPEAKER_01God, yeah.
SPEAKER_00So yeah, it's but I'm making up for it now, do you know what I mean?
SPEAKER_01So I want to talk about some of the work you've done. Um you're a peer link worker for the the Wheelchair Center for Infant Living. Um, was that supporting disabled people to live independently?
SPEAKER_00No, no, it was giving disabled people a voice. Um, before I actually joined them, I know we're going off and a bit of death, but it's all relevant. My first paid job was actually with a people first group for people with learning disabilities. Now, if you said to me when I was younger, I'd be working with people with learning disabilities, I would have said, no, not for me, not for me. But do you know what? It was the best thing I ever did because it made me realize that we all face the same barriers and the same issues. So I was there, I was at people's house for seven years.
SPEAKER_01So we what were you doing with the people you were working with? How were you helping them?
SPEAKER_00The young people giving them a voice, advocating for them, giving them the confidence to speak up and have a voice. So we'd run meetings, and if anything was happening in the northeast Somerset area that we needed to know about, and the council needed feedback, they would come to us. So it was it was real well because he really, and the same with um the same with um Wiltshire Center for Independent Living. It was about making sure that all disabled people living in Wiltshire had a voice or have a voice. So most of my work has been advocating or or making sure that disabled people's rights are being met, and as I've got older, I've got uh a lot more fire in my belly, do you know what I mean?
SPEAKER_01It's it's really I I'm in a good place now, so and when you worked with councils and people like that, how receptive have they been to change? Have you had to work hard in some instances to challenge perceptions? I can't say too much.
SPEAKER_00Yeah.
SPEAKER_01Um have there been challenges? Has it been frustrating at point?
SPEAKER_00There have been challenges, but they they're all Wilshire are starting to get it as well. So it's a bit here and to be honest, it's a bit of both. So so um and my current role at community first, we're a consultation group. So I'm not working as much on the um disability side, although I'm still gonna um we're still connecting with minority groups, but um but what I because so basically I left we lost our funding at Wilts' Hill. So I had to get GP'd over, I had to get GP'd over to community first, which was which was an interesting interesting time because I didn't want to leave Wiltshill because I'd been there for 11 years, but um but I'd been at Community First Wilcher now for three years, and my role there is more consultation.
SPEAKER_01Yeah. So it's about finding out what people want, like if the council come to us and they want feedback on certain things, then we get that feedback, yeah, and then write a report um and we we take it from there, so it's more consultation, but I am managing to weave disability into my job, so it's still important to me, and like we we've seen like public services, the funding for public services has been cut not only in the last 12 years of a conservative government, but also since uh Labour has been elected, like how much of an impact of those cuts to public services have had had on me personally or or the work the work that you're doing.
SPEAKER_00No, I mate, this could be for another podcast because many of us, I'm frustrated, I'm I'm I'm angry, am I allowed to get a bit political here? Please, yes. Um I thought with the new Labour government, I thought they'd they'd they'd be changed. I mean, I've never been keen on Starmer anyway, but I wanted to give him the benefit of the doubt. Yeah. But it does feel like the the Tories in red, and there's no there's no comparison to there's no change, in fact, it feels worse.
SPEAKER_01I think I think if you look at Starmer's policies and you compare them, for example, with Cameron, there's not much difference between what Cameron was doing and what Starmer's doing now.
SPEAKER_00No, no, and I get I get frustrated because I admit as many of my mates know, and people on Facebook know on my social media, I'm quite left-wing leaning any anyway, and I get frustrated because there's no party that speaks for us, and there's no party that speaks for the for us as a disabled community now politics, you know, at this moment is quite divisive. I mean, I've had one hell of a week with politics. Um, so regarding I was hopeful with labor, but I'm very disappointed and angry because nothing's changed. In fact, it's got wor you could say it's got worse.
SPEAKER_01And do you think the country would benefit um if politics is a viable career for more disabled people, if there were more disabled than people? And was that something that you ever thought about?
SPEAKER_00I I would love to see more disabled people in. As MP. Had I ever thought about it, I may have flirted with the idea, but I think we all have that one time or the or another in our lives. But do you know what? I wouldn't be a politician if anyone paid me. Um so so but I will I just want to see a party, Kieran, that that cares for that takes up issues into consideration. I mean, the only viable party for me at the moment is the green party.
SPEAKER_01I agree with you, but what it would say is that Plaid Committee and Wales are also putting out the pot is green and plied community.
SPEAKER_00You see, if I lived in Cornwall and vote for maybe in Curno, but I can't, but you're lucky in in Wales, and I've always said that I would love to live in Wales because I just love you guys anyway. So you're lucky because you've got another option. Yeah. Look at look at our options. Listen.
SPEAKER_01I I don't I I am really glad that we have got play coming in where that is a valuable option, but I am worried about Santa's Elekham's in May, but we'll have to see how they go. Yeah, yeah. I'm gonna move on from politics a little bit because I we could be here all day. Um that's fine. So you were uh peer link. Um sorry, I'm gonna learn something from that. Um in terms of independent living for disabled people, what needs to be put in place, do you think, to ensure that disabled people can are more able to live independently?
SPEAKER_00I think we need a lot more people need to know about direct payments or personal budget. Um a lot more people need to have flexible timings that work for them rather than an agency or a PA. Um, because I do think there is scope out there for people that live independently, that don't want to go to bed at nine o'clock or even ten o'clock in the evening, don't want to go out, and I think there should be a twilight shift for people that want to stay up longer and later. Um, I think there needs to be a bit more flexibility in direct payments and personal budgets. Um, to to so for me it's not just about getting up and having a shower or going on the toilet, it's about having a whole life.
SPEAKER_01And people might not know what direct payments are, so would you mind doing a like a short a quick, a quick a quick um a direct payment is an amount of money you get from the council so that you can once you've been sorry, take it back, once you've been assessed to having a care needle by social services, you then you then get an option of being given a direct payment, which means to an extent is flexible.
SPEAKER_00So the money's I go through the banking service, but a lot of people can have a budget in their own, they have to set up their own bank account, and then they pay whoever they would like to be their PA or care, or if they want to go through an agency, they can. It just gives you that different kind of option.
SPEAKER_01And it gives the autonomy to the disabled person, they're not being dictated to by the company. Exactly. That's exactly it. And if people haven't set that up and are interested in that, they should contact their local council because they'll be the ones to say that they need a social care assessment. And the those assessments they can be quite difficult, and they can bring up a lot of kind of internalizabilism and very much like kind of some not very nice feelings that disabled people might have about ourselves. So, like, how would you advise people to maybe deal with that? And because it is hard, isn't it, Matt?
SPEAKER_00Yeah, just that's funny because well, it's not funny, but I would say have someone else with you if you need support, because sometimes you might feel stressed and anxious, so you can always have someone else fighting your corner. Um be confident in knowing what you want and don't let the thing is you this is your life. You you're the disabled person, you live it every day. So don't be dictated by a care man, a care manager, a social worker. Um, I have to say, over the last few years, I've had some really good social workers that get direct payments. So yeah, so it's I'm lucky that way.
SPEAKER_01Uh thank you, Matt. That was lovely if you showed advice. Um, I'd like to ask you now um how you met your wife, Jeanette, and in terms of dating, because it's a big thing and it can be quite difficult with any challenges, and what what was your experience of it?
SPEAKER_00Well, Kieran, I don't know whether I should say this, but when I moved back to Trowbridge, because I lived in Plymouth for years, so I came back to Trobridge. Yeah, I had to move into residential, so I met my wife there. Now, I won't go into the why's and wherefore because there was a knot, there was a knot. So basically, we met there, um, which was a big no-no because obviously I lived in a care home. Um long story short, she was given an ultimatum and she said, give me three months, I'll find another job. Um and she left and the rest is history. Um we've been married for 20, we've been together for 28 years. Married for 22 this year.
SPEAKER_01Congratulations, man.
SPEAKER_00Thank you, mate.
SPEAKER_01But like it is brilliant, but like I think it's been wonderful on this podcast. People see people in living confident intervention lives with careers in relationships, and it just shows that these things are possible to people.
SPEAKER_00Yeah. I mean, going going back to your question about what barriers we like Jeanette was told it would never work, that I would that I'm only looking for love, but uh, you know what I mean? So like we've sort of stuck a middle finger up to those people that have said it wouldn't last because 22 28 years, 22 married, you know, we've had our ups and downs, but that's like every relationship. Yeah, but it's just because I just because we're disabled doesn't mean we can achieve we can't achieve what any non-disabled person thinks but granted. Absolutely, but yeah, congratulations.
SPEAKER_01Yeah, something to me.
SPEAKER_00Thank you.
SPEAKER_01And you write about a lot of this stuff in your memoir, keep on keeping on, which is available uh now. Um thank you for sending this to me. I'm really thinking about uh reading it now as well. Like, why did you decide to write it now? What was the inspiration to write it?
SPEAKER_00Well, my my best mate who also has a disability, so um we were outside one day just chilling after work, and I'd just been through my first lot of cancer, and she said she said, Matt, I think you should write a book because you've got a lot to say, um, and you've you've done a lot, do you know what I mean? Yeah, and and and I was like, okay, um one it would take me about a hundred years to write a book if I did it in Mugzo. So Mary kindly said, Look, I'll write it. I'll I'll I'll be a scribe. You just tell me you just tell me your story.
SPEAKER_02Yeah.
SPEAKER_00So that's how it happened. Um, we finished it in November 24. It's self-published, and I just wanted to show that adding CP is a positive thing. Do you know what I mean?
SPEAKER_01It gives you a certain perspective, you know. For me, I wouldn't have done a lot of things that I have done because I've got CP. It's exactly it, mate.
SPEAKER_00That is exactly it. And having a disability, I know that it I get is hard. I know we know that that's covered with the territory, but I just wanted to tell my story. Does that make sense? And was that a cathartic experience for you? No, I cried, I cried, I laughed, I uh I was like, shit, I couldn't, you know, it all yes, it was very cathartic.
SPEAKER_01But are you glad that you've done it and put it out into the world?
SPEAKER_00I'm I'm glad I've done it. I'm not I wouldn't write another one because I think lots of people said to me, we want to know the grittier side, like what you got up to, and like I'm like no. But that that stays that stays with me. Um so I'm glad I wrote it. Um it was self-published, but I've still got to flug the hell out of it, even though I wrote it in 24. But I just wanted people to know my story, and the amount of positive feedback I've got from that book has been very humbling and very I'm truly grateful.
SPEAKER_01And this is an opportunity for you to flag the hell out of it. So, where can people buy it? Where can you get it?
SPEAKER_00You can buy it on Amazon. Um, if you go, if you look my name, Matt Stab, it comes up on Amazon. Um, so you can buy it on Amazon. It's also now now on Waterstone's website. It's not in the bookshop, but it's in the on the website.
SPEAKER_01I will put those links in the description of this episode that so that people can go directly there if you want to read Matt's back. I'll put the link.
SPEAKER_00Thank you very much, Kieran.
SPEAKER_01And sport has also been a really big part of your life as well. Yeah, yeah. And football. So how did you first get interested in in football?
SPEAKER_00Oh well, I've been um I've been an Ipswich Town fan. And I'll say that loudly now, because at this moment in time it's interesting. But I've been an Ipswich Town fan since I was seven, and I'm now 55.
SPEAKER_01So do you do you remember them winning the UEFA Cup?
SPEAKER_00Um I I I remember it all. I remember it all. In fact, I could have watched the UEFA Cup game because I was at school and I had to go to bed and they wouldn't let me stay up and watch. No way! No way, and but mate, you know what? I can remember, I can remember the FA Cup. It's Kings Day. I was sat in the TV room with my Larson fan who at the end of the game broke down in tears because we beat them 1-0. Um so yeah, football's always been a massive part of my life. Um, my uncle, who I mention in the book, got me into Ipswich Town. Um, and what a lot of people don't know, I used to go and watch because growing up in Plymouth, my stepdad used to take me to Archle as well. So there were times when Ipswee's played Arch, I'd have to go to the Archby with my ips which top underneath.
SPEAKER_01How has like accessibility and facilities changed for you as a disabled football fan over your time watching?
SPEAKER_00No, it's not it's got remarkably better over the years. I mean, I'm guessing for you at Swan, the access is pretty damn good as well, actually.
SPEAKER_01We're lucky to have a really good DSA and a really good access.
SPEAKER_00We've got a really good DSA, it's with me, an absolute legend. You bend over backwards, do anything for anyone, and ironically, I went up to Wrexham the other week. Yeah, and I met Kerry. Um Wrexham DSA, superb, lovely person, lovely, lovely person. So yeah, so access has got their it's just we come on so far, do you know what I mean? It's so football and I I play power chair football as well. I wanted to ask you about that. So I try, I try and play power chair football. Which is me, if you'd said to me when I was younger I'd be playing football, I would have been like, wow.
SPEAKER_01So we had I had Alice Palmer on a couple of days ago who played power chair hockey. So can you explain what power chair football is and and how it works?
SPEAKER_00Well, power chair football is uh for a side game. Um it's played similar to hockey on the on a court. We it's very similar to hockey in that we use the same right force power chairs. Um and you're only you're uh it's well played. I haven't played for a while because I mean uh I'm long-term injured. So so yeah, it's just it it gives me that buzz that I mean I play in the regional leagues, which are the Now League, so I'll never be a international, never. And plus Wales haven't got a national team.
SPEAKER_01Wales haven't got a national team. Well that needs to change.
SPEAKER_00So so Scot Scotland have got one, Ireland have got one. I think Northern Ireland have and England have.
SPEAKER_01So I'm very looking at me. Sorry, Matt, I lost you a bit then. Can you go back a bit to start the sending edit this bit in the edit? Right. Where did you lose me? You got uh you said Scotland have got one, England have got one, Ireland have got one, then you cut off yeah, Wales, Wales are the only national team that haven't got one, and I think I don't know why, um, but I I don't know, it'd be good to get a Welsh one going.
SPEAKER_00And you may wonder why I support Wales. Yes, I do, and I do want to come on to that, and it was 2016 I just fell in love with the World One because I got I I used to I used to travel like go and watch England, but the past 20 years uh yeah I've become more in tune with my Celtic roots because I'm Cornish. Yeah, yeah. So and I got fed up with things that were going on with the England supporters, you know, you know how it goes. They're more I I just got fed up with it. So 2016 was I I I fell in love with the national team. Does that sound that makes sense?
SPEAKER_01That that run to the semi-finals of the Euros is incredible. Um I'm of the mindset that anyone who wants to be Welsh can be Welsh so much. You're you're a Welsh friend.
SPEAKER_00I ironically, I mean, I've got loads of Welsh makes anyway, so so it it just and I I mean I'm not just an armchair supporter, I do get over when I can to see international games. I'm a member of the Red Wolf um, but yeah, Wales for me uh uh, although it was frustrating last night. I love them. I love the ethos of the national team, I love the team spirit, there's no cockiness, there's no, and I think it's because of the size of the nation. Yes, you know what I mean. Absolutely, I just love it. But yeah, football to me has played a large part in my life. So yeah.
SPEAKER_01Did you ever feel frustrated? Or I'm not able to play football. I really would have liked to play football. Did that ever cost me?
SPEAKER_00Yeah, I mean, like every disabled kid with CP, I think we've all been through that. Do you know what I mean? And yeah, I think, yes, I wanted to be a footballer when I grow up. But then I realized I couldn't. But in that old and I found that I could play powder, but to be honest, I don't know how long I'll keep playing because you know, as you get older and longer C with CP, there's extra added issues about aches and pains. And I'm I've been struggling recently, but that's by the by. But I'm I'm glad that I've been able to play the sport I love. So yeah.
SPEAKER_01Matt, the the last question I've got for you today is what is one thing that you wish people knew about cerebral pality?
SPEAKER_00Cerebral pality, oh where where can I start? One thing, one thing or another thing. One thing, one thing, okay. It's it's made me who I am today, but it it doesn't, it it hasn't defined who I am. Yeah, it's part of me, and I love it, and as I've got older, I've embraced it even more because something you said earlier, I wouldn't have achieved what I have if I hadn't had some body, and I just I'm proud to have CP. You know what I mean? Yeah, it's it's and although I know it can make frustrating, but it's me. You know, we don't know any different, do we? You know, just you know, it's it's it's one and one thing just uh I learned that keep going. I mean, that's the title of my book, keep on keeping on. Um, and that's what I've done.
SPEAKER_01Um thank you so much for your time today, Matt. It's been brilliant talking to you.
SPEAKER_00Thank you for having me, Karen. You're a legend, mate.
SPEAKER_01Thank you, Matt. And and thank you for listening or watching this episode of the Balzy Podcast. Just a reminder that you can uh order keep on keeping on by my stab if you would like to read it. Um thank you for listening to this episode. We've only got a couple left if we need to add to that. We've only got a couple left. Um, but yeah, thank you for tuning in through Edmonth and joining me with such amazing guests. And I hope you'll continue watching and listening and commenting and liking as we complete this journey of CPORNAS month in the next few days. But until the next episode, it's goodbye for me and goodbye from Matt. Goodbye. Bye guys. Thank you for listening to this episode of the Pulsy 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.