In this episode, Peta speaks with Carolyn Campbell-McLean and Jaxon Taylor, two people living with Muscular Dystrophy. Carolyn reflects on her decades of experience as a woman with MD, emphasising the importance of purpose and connection in navigating life’s challenges.
Meanwhile, Jaxon offers insights as a young man in his late teens, sharing his confidence, determination, and passion for fostering community. Together, they discuss the challenges and triumphs of life stages, support systems, and living life to the fullest.
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode Transcript:
MDNSW.mp3
Peta [00:00:03] Hello and welcome to the I Can't Stand podcast. The podcast answering your questions on what life is like when you have a disability. My name is Peta. I have cerebral palsy and I'm your host. This week is with two amazing disabled individuals, Carolyn Campbell-McLean and Jaxon Taylor, both of which have come on the show to share what their life is like and how they are supported by muscular dystrophy, New South Wales. It was really interesting to see a difference in perspective, both as male and female and also a difference in age. Jaxon is in his late teens. So without any further ado, let's get into it.
Carolyn [00:01:07] I paid her and everybody. My name's Carolyn Campbell-McLean. It's great to be on here today to talk about my work at Muscular Dystrophy, New South Wales. So yeah, I'm a senior community support specialist. I had a new title, so I almost forgot what it was. But basically my job is to support people who live with muscular dystrophy and any of the 70 different types of neuromuscular conditions and their families and give them information connection. They have lots of events and programs. And so, yeah, my job is really to get some education and going out there in the community about what muscular dystrophy is and the services and supports that are available to people that might be living with neuromuscular conditions.
Peta [00:01:59] What are the main gaps that you find that people still don't understand about muscular dystrophy that you're constantly re-educating the community about?
Carolyn [00:02:09] Yeah, that's a really good question, Peta. So basically, I guess even the name is hard to say. And remember that muscular dystrophy can sometimes get muddled up. Like MDA is the short form, but sometimes that can get about with motor neurone disease, which is often in Indy. But just to be clear that neuromuscular conditions, which is like a COBRA for the muscular dystrophy, is there any kind of physical disability that relate to progressive weakness in either the nerves or the muscles? When someone might be diagnosed, they could be diagnosed as as a child or perhaps even before birth. They could be diagnosed as a child, as an adult, and could be diagnosed later on in life. So it's and it's conditions that affect people in all different life stages. And I guess depending on their life stage when they're diagnosed, that has a huge impact on their needs and the supports that they might find helpful. I live with a condition called spinal muscular atrophy, which is SMI for sure. And I was diagnosed as a very young child, and I don't ever remember not having a disability. And I've been a wheelchair user for, you know, nearly about 48 years now. And I always my whole life. So for me, it's been a long journey of, I guess, acceptance in in terms of that this is my life and this I haven't really known any other diff difference in my life, whereas people who might be diagnosed will have symptoms onset later on in life. They will have various degrees of challenging psychological issues to do with, you know, the changes in and in their walking, whether them ability is ability is affected and people might have difficulty swallowing or breathing and all sorts of physical functions that people usually just take for granted can be affected by the different muscular dystrophy. Even getting a diagnosis sometimes in the first place can be challenging. Some people actually spend many years getting and going through investigations, testing and trying to find the right specialists to diagnose conditions. So we usually find that when people do have a diagnosis, that's much more empowering for them because they can then seek further information. And they can connect with other people that live with that condition. And I guess as someone who runs what we call the Peer Connect program and the New South Wales, connecting with all the people with lived experience is very, very powerful.
Peta [00:05:04] And I have to say, what you've just spoken about really encompasses how challenging it can be to have a disability, because like everyone we age and we face different challenges as we get older. So I'm sure that's where a lot of your challenge would lie in your job, that in each life stage brings up different challenges. Like I'm sure you'll agree with me. Things like education can be super challenging for a young person with a disability. Getting employed is a massive, massive issue for people in our community and also for families and societies or society in general to not see disabilities as a tragedy, even though we who might live in the disability community in our own little bubble know very well that it isn't. There's still so much there that needs to be better understood.
Carolyn [00:06:01] Absolutely. Peta, I totally agree with you. Absolutely. I mean, it really does affect people in different life stages and then know different life stages, bring up different things for people. So, you know, whether you, as you said, your young person leaving school and off into the big wide world of further educational work, you know, those have different implications for you when you're perhaps a wheelchair user or someone who uses another form of mobility device. But then even into later life like retirement and the challenges with health care, you know, trying to get I know as a woman living with muscular dystrophy, it's hard to even get things like mammograms that are wheelchair accessible. You know, having cuts means isn't all that easy in a doctor's office when there's no hoist to get you on to a bed or things like that. So I think that's where connection and peer support and like getting that right information, getting in the loop with people and other organisations and yeah, that's really, really valuable for people because often you can be out, you know, sort of living your life and you come up against struggles and challenges and you just don't really know what to do. So it's really great if you can connect with other people. And usually it's the case that someone's experienced that same similar situation in like an office, really valuable wisdom and guidance. So it's also really nice, I guess, emotionally, to know that we're not alone.
Peta [00:07:32] I'm not too sure whether this question is appropriate, but I have to ask you, because I feel it's an area that many people ignore. And that's the fact that with a progressive disability, do people in this peer support group sometimes find it confronting to see what their future might look like? Or is there something empowering in saying that knowing that people still go forward and live, you know, really great lives despite that progression of their disability?
Carolyn [00:08:03] Yeah, that's a really, really good question, Peta. I think, you know, it can be both. I think it can really be, you know, at times people do find it kind of confronting to see, you know, often kids may have a diagnosis that say, 3 or 4 years old. They might meet other people who might be adults. They might say that I'm using a wheelchair or they might say that they're using BiPAP or, you know, not being able to feed themselves or things like that, although that can be confronting. It also can be reassuring that, you know, I know for myself my own personal stories that I was married to Danny and he had Titian muscular Dystrophy and he lived till he was 40 years old and unfortunately lost him some time ago now. But for him to have that, had that 40 years And what are the doctors only used to have a life expectancy? I would tell the families maybe only to be 15 or 20 years old that the person will live. And when I tell young families my my husband was 40 when he passed like that, although confronting was also a real sense of hope. And, you know, I tell him, tell them about his life that he lived, which was a very full life. So yeah, I guess to answer your question, it can be a little bit daunting to know about the realities of conditions and what might happen, but it's also really empowering and inspiring to actually see people despite the challenges that they live with, to go on and live really full and good lives and happy and fulfilled lives.
Peta [00:09:42] I think that just really shows how important it is to have lived experience and how powerful that can be. Because I'm sure when you're supporting and consulting with young people with muscular dystrophy to see you living your life can be really powerful for them. But you just have a different level of knowledge and understanding that not even the parents may necessarily have. And I think that's so important. And why disability having our own community is really important because really it's only us who understand what it's like from our perspective. That's why I think parent groups are really important to that group as well, because as the disabled, quote unquote child myself, I don't understand what it's like to have a disabled child. I just know what it's like to be the disabled person. I'm really interested to hear about how your disability was framed to you as a child and how you keep that in mind when educating kids of today and how that might be different.
Carolyn [00:10:50] Is I spot on? Peta It's lovely to speak to someone who really gets it. Even though the doctors did paint a bit of a gloomy picture about my life. Unfortunately, my parents were like, Well, we're not going to let any of that stop care or stop us from giving her the most opportunities. I'm not sure if it's an innate personality thing or if it's something I've developed over time, but I just use what I can. My strengths are what I use, so I use humour and I use my not being shy to have a personality, to to kind of connect with people and to make friends and, and to say, you know what? We can offer each other. And I guess I've taken that into my adult life as well.
Peta [00:11:35] I wanted to go back and talk about the young people who have muscular dystrophy today that you say, as you know, Jaxon is part of this episode that the listeners would have either heard at the start of at the end. I'm not too sure yet, but can you see a difference between how disabilities viewed by the younger generations or those of those of us who do have disabilities, or do you think it's just how your parents bring you up in that perspective and your innate personality is you were talking about yourself. How do you feel the younger generation with disabilities are today?
Carolyn [00:12:13] I think it can be really challenging for some people to, you know, because along with physical disability, that can be other things that come with that. Some people do really struggle emotionally and psychologically with accepting their life and the things that they're not able to do for themselves. And, you know, it's not all bells and whistles. It's not all roses. For a lot of people. Parents are often and young people are often looking at what they can't do. Whereas I think it's just really important to focus on what you can do and leave the rest behind because, you know, it just it's not healthy to to focus on what you can't do. It's really much more empowering and and positive to be out and more healthy to be able to look at what you can do. I just know the importance of finding your finding your niche, finding your thing, what makes you happy. Whether it's sport, whether it's art, whatever your thing is that keeps you going, going to find that you got to going to keep up with it. And I think young people with a disability just need that little bit, maybe more extra support sometimes to find those things and to be able to find accessible hobbies, accessible passions. Also connecting with kids that do have similar conditions to them. And we've seen similar challenges like, you know, having to be rolled over in the middle of the night multiple times or needing a BiPAP machine on to break overnight or having someone else to feed them or being them being on initial feeding or something like that. You know, those kind of experiences are really that's what you were saying earlier about whether the ones who really live in where the ones who have the only very unique perspective. So being able to connect with others and find out how they're managing it emotionally and practically is so, so, so helpful for people. Particularly for people who live in regional and remote areas, they might be the only person in their town that uses a wheelchair. The only person. So for them to be out of the other people, if you do that as well, or live their life that way. That's a very powerful thing.
Peta [00:14:36] I'm really interested to talk to someone like myself who does live independently and manages your own NDIS package. How do you advise people in the muscular Dystrophy New South Wales network in and around living independently, living to their best ability and managing the NDIS?
Carolyn [00:14:59] Well, that's a big question, Peta, but I'll try my best. But a great one and I'm really grateful. I'm really glad to meet someone as well that is living independently because I think to me that's one of the most important achievements that I've had in my life. Think I was 19 when I said to my mom, Mom, I'm getting engaged and moving out of home. And she looked at me and said, What about the saucepans? And I guess that was my mom's way of saying, We will cook for you and you will look after you. No one can look after you better than me. You know, all that kind of thing that you get from parents. And you know, I love her. She's a great mom. And she was just worried. I guess I also had to know that my partner, Danny, also had significant physical disability. But I was like, Man, this is good. Okay. Like, I'm sure we can still do that. It's a really important thing to be able to live the life you want and your own in your own terms and recruit your own support workers, the people you choose and not just have the people that are chosen that turn up on your door at 7 p.m. and ready to put you to bed. And I remember saying to them, I'm not ready to go to bed. It's not even dark. For me, it's very important to have full control and choice over who's coming into your home when they're coming into your home and the tasks that they're doing and how they are doing those tasks. So I just don't see them golfing, cooking dinner. I'll go into the kitchen with them and sit with them and say, Could you please chop that onion this way? Would you turn on the oven? Could you do this? And we do it together because I really see my support worker as an extension of my arms and someone who's there to support me to do the things I want to do. It's a very supportive culture that I try to having my team so that I have every six months we might have a team meeting that we have that team meeting at the pub and you know, everyone has dinner and they get to know each other and they get to know each other's families and, and you know, then they're more likely to want to swap with each other when they, you know, when someone's off sick, someone's more likely to come with them if they know them than I understand them. And, you know, and I get to know, you know, bond together. But yeah, I think the NDIS is, is a great thing. You know, I think it's a shame that the NBA has become a bit of a four letter word because it's an inherently what we wanted and advocated for for so long, and to have a scheme that could support us like this no matter where we leaving Australia and no matter what disability we have and, you know, all of those inequities that used to happen and. I think it's very important that we preserve that we preserve this game and make sure that it continues to support people into the future.
Peta [00:17:53] Yeah, it completely changed my life. So I completely agree with you and this is so fundamental to me. And back to what you were saying before in and around, living independently, while it's a cliche and doesn't necessarily relate to disabled people as much. You can't be what you can't say because clearly you went and lived independently, possibly without an example of how to do it. You just worked it out between the support network you had at the time. But I'm sure that's really empowering to know that that can be somebody's future for the people that you work with at Muscular Dystrophy, New South Wales When we think about the future, the future of disability, what do you hope for people with muscular dystrophy and disabilities as a whole?
Carolyn [00:18:43] Yeah, I just want people to be able to do what they want to do in their life like and not have so much, so much so many barriers in their way. Like I was talking to a young man from Orange in regional New South Wales last week and he's applied for FDA funding to support a disability accommodation so that he can move to Sydney and sort of start his life. He's just finished uni and you know, some graduated from a college degree and he's ready to start all the work and, you know, start living his exciting life and. Yeah, he's, I think seven months he's been waiting for the NDIS to get that. Tell you about a plan review where he's, you know, he's done all the right things and you know, he's applied for SCA and he's done all the assessments, he's done all the forms and not a lawyer and he's wrong. And I tell him with no response, like, no nothing. And I just think that's not good enough. So, yeah, I just would like young people to be able to go and often do their things, you know, with support and information and encouragement and to not have things in their one.
Jaxon [00:19:57] Hi, My name's Jaxon Taylor. I'm 18 and I have Merosin deficient muscular dystrophy, which means I'm a full time wheelchair user.
Peta [00:20:06] It's such a pleasure to have you on the podcast today. Jaxon Thank you so much for being here. As I would have explained in the introduction, this is a special episode focusing on Am M.D. and my goodness, my dyslexia just clicked in right then. And I understand you've been part of the organisation for several years now. Why did you first get involved with the organisation?
Jaxon [00:20:35] Well, it was. I've just been around muscle this fitness about forever. So it just kind of happened quite naturally, to be honest. I just see like there's so many good people there, you know, their carers, the staff, the other campers involved, like the other participants, you know, they're all absolutely amazing people. I volunteered recently with them to help out in a carrier training day where they had all the carers going to the camp for the first time. And they're learning, you know, how to use a hoist and how to do all this stuff. The main thing I do when I'm teaching people, whether it be when I'm speaking at one of the training days, which I did a little while ago, or at the retreat itself, is I usually just tell them that lie. I if they're confident, I'm confident. And that's I find that so many carers get better at it once they know that I'm like, there's a mutual confidence, if that makes sense. Like I always say that you just need to be confident in yourself to learn because then I'll feel more comfy with that. Be. I will talk to people. I will communicate my needs. So if they are not confident, I will always be there to support them.
Peta [00:21:56] Do you think your confidence has been fostered through being part of the New South Wales?
Jaxon [00:22:04] I do think it's helped just be able to see so many other people would just live their best life when they have a disability. I think it really is quite inspiring just seeing, you know, various people just go on about their life. You know, we're not being hinted at any certain way. We're just we're going around. We're all you know, we're going through the motions of life as everyone else is, as just, you know, the motions we have are a bit rockier. My type in particular medicine deficient muscular dystrophy. It's very rare. Like I. I think I've met like five people or something with the condition full stop and they're all like, not much older than me. So it's like we're all kind of just going through all that together, basically. So then you got that. But in the sort of M.D. community at large, you know, ignoring my specific type, I would say it definitely does help just to say, you know, there's a lot of strong people that I've met through MDA NSW and just the wider disability community in general that, you know, really do, you know, provide all the hope and just make you a well, you know, nothing stopping us.
Peta [00:23:19] I love to hear that level of confidence. And clearly you're very comfortable with the person that you are, which is just makes me so happy because I know that that's not the case for so many young disabled people. And I'm sure that there's many people listening to this episode who might be young like yourself, who aren't comfortable with their disability. And it's just fantastic to have a voice out there like yours. Jaxon To really say, You know what? This is life. It's fine. In fact, it can be actually great.
Jaxon [00:23:58] Yeah, like I. I always think, like, I can't change the fact that I'm in a wheelchair, so why should I mope about it? That's how I've always been. Because I might as well make the most of it right. When I was younger, it was like it wasn't like a, Hey, you have muscular dystrophy. That wasn't that wasn't part of it. It was just like, Well, I guess I'm playing more Mario Kart than everyone else. My mom wanted me to join a sport when I was really young because I just wasn't doing much with myself. I was playing a lot of games and just sitting inside a lot, not making much social interaction. And she found passage of football. You know, it's been a really, really fun sport and it just means so much to me. The amount of connections I made and the amount of growth I've had in that sport, both as a person and as a player. I just, you know, sport allows you to have that connection. I applied a little while ago as a local hero at Westfield Parramatta. They have a program with I donate up to $20,000 to people who are making positive change in the sort of local area. Third and seven would get 5000 bucks and the winner gets $20,000. And I'm very happy to announce budget $20,000.
Peta [00:25:28] Congratulations.
Jaxon [00:25:30] Thank you so much. We got a bunch of public votes, so we will now let 20,000 bus is going to help us get another power chair in because pouches are not cheap. If you're not aware of a sports chair, it's sort of like it's lower to the ground than an average day chair, Like an average bill or whatever. It's a lot faster in acceleration. It's a little more nimble. But if you were to put it in any environment except for sport, it just doesn't work. You try putting it up a ramp, it just doesn't want to you put it on grass. It doesn't want to. So they're very special. Built for sports and winning this grant, which is very exciting, is definitely going to help us grow the wonderful community that is purchasable.
Peta [00:26:22] That's amazing. I suppose it's a bit like an F1 car. This is a day to day car that we all use to get around our life. Really. F1 car is fast and is low to the ground, but I'm not too sure how it would go in traffic. So is it something that you would like to pursue later on in your life? Jaxon Or do you feel like maybe podcasting or media is the right thing for you? I know that you have your very own podcast. So why don't you tell us about that?
Jaxon [00:26:59] Yeah, so I've been involved, as I said, with Passion Football for ten years. And this year I decided, you know, I have a big passion in podcasting. So I decided to fuse the two and create the Powered by Football podcast. We just sort of delve into the sport and we get to know, you know, what the results are, what the tables look in life and just have a chat. We just, you know, the bite sized episodes like ten minutes once a week and they're currently not running these episodes of seasons Finished. It usually runs between February and July. But, you know, once the season does roll around from the end of next year, you will definitely be hearing a lot of my voice on the podcasting feed, which is on Spotify, Apple, YouTube, all those. I'm also currently studying a Bachelor of Communications majoring in journalism at Western Sydney University. I want to go into podcasting full time and that is my sort of means to an end. You know, a lot of people say if you could take a pill and walk tomorrow, would you? And I have always said no. Because to me, it's like I live a life that's different and I hope to continue to be different and I hope to continue to be myself. And, you know, my disability is part of my identity.
Peta [00:28:25] Thank you for listening to this week's episode, and thank you, Carolyn and Jaxon for your time. I thoroughly enjoyed speaking to both of you. If you did enjoy this episode, listening to it in your ears, could I encourage you to leave it writing in reviews on Apple or Spotify? Share the show on social media or go follow me over on Instagram. My handle is @petahooke. You can always get in touch and send me an email. My email address is icantstandpodcast@gmail.com. Thank you again all for listening and until next week. Have a good one, guys. Bye. I would like to respectfully acknowledge Wurundjeri people and Bunurong people of the Kulin Nation of which I recalled the podcast today. And I pay my respects to both elders past and present, along with and especially to those in the First Nations communities who are disabled themselves.
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