A Wheelie Good Chat
A Wheelie Good Chat is hosted by me, Sam Cole. I dive into real-life experiences of living with a physical disability.
With raw honesty and a touch of humour, I explore everything from daily challenges to societal assumptions, shining a light on the stories that often go unheard.
Each episode features open conversations and reflections that aim to break barriers, challenge the norm and inspire more inclusive thinking, one chat at a time.
Follow along on Instagram: @awheeliegoodchat | @sam.bamalama
A Wheelie Good Chat
37. Part 3 - Mum & Me: Independence, Resilience, and What Comes Next with Di Jones
In the final part of this three-part series, Mum and I reflect on our 24-year journey navigating disability, independence, and the future ahead. What began with a health scare that pushed us to accept outside help has grown into a new balance of care, freedom, and resilience.
We open up about how smart home technology changed my independence, the reality of facing employment discrimination, and the tough but necessary conversations about ageing and what comes next.
It’s a raw, honest chat about disability, and redefining what support really looks like. A special mention to my mum for being so open and willing to share her side of the journey.
Thanks so much for listening to A Wheelie Good Chat! Your support means the world.
Follow along on Instagram: @awheeliegoodchat | @sam.bamalama
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I want to start this episode of A Wheelie Good Chat by acknowledging that I'm recording on Whadjuk Noongar country. I pay my respects to the Elders, past, present and emerging. Always was, always will be, Aboriginal land. I'm your host, Sam Cole, and this is A Wheelie Good Chat where I get real about life with a disability and everything in between yes, even the not so PG stuff. I live with a condition called dystonia and I started this podcast to break stigma and share the things we as a society don't talk enough about. Hey, everyone, thank you for joining.
Sam:Very I'm very excited to, I guess, finalise this series with my mum. I've really enjoyed this little series. It's been really good and really insightful for me, actually, things that I hadn't learnt, things that I hadn't yet realised or even asked or even thought about, so it's been really good from my perspective. Yeah and hello and welcome back to my mum, hi Sam. So in today's episode, we're just going to be talking about growing older, the change in roles and what will come next for us, those kind of discussions. So if you listen to my episode 34, I'm pretty sure about the future. So it might be similar to that kind of conversation, but my mum will be in for this episode and discussions, so I guess a good place to start with this conversation. But my mum will be in for this episode and discussions, so I guess a good place to start with this conversation today. Mum is our current dynamic where we're at now in life independence and that kind of role.
Di:Our current dynamics took a little while to evolve. I guess, if I can just take us back to your early adulthood when I basically was your only carer, I had what I thought was a heart attack which could have quite possibly because of family history. My father had bypass surgery when he was only 52. And so I was rushed off to hospital, leaving you to sort out someone to help you. In the immediate time we had your cousin and also a friend of mine who just rushed to you and did whatever you needed. But I think they decided to divide and conquer you, with your cousin who cared for you while I was incapacitated, and my friend who came to the hospital and read me the Riot Act, told me that I couldn't do it all by myself, that I needed to get supports in place, and she was really wonderful in touching base with another friend of ours who was a long-term carer and found places I could go to get support. So we got other things, people to come in and assist you with personal care. Then that evolved to support and looking at perhaps me if I wanted to take time away, so almost like respite, which I had never, ever taken respite in all that time. So I guess that forced me to have a perspective and, taking that back, I hadn't had a heart attack. They think it was either stress or related pains in my chest, but I do say to anyone out there, don't ignore it, because it could have easily been a heart attack. So therefore, that led us to your adulthood and that forced us to get services and support in place for you.
Di:I guess that's very much changed and evolved over time. The support and the way that works for you has changed. And then NDIS changed that as well, because that allowed you far more flexibility and it allows everyone with disabilities, no matter who, the flexibility to use their funding that's purposeful and tailor-made to them. So what you need isn't what someone else needs. But negotiating that initially was really a difficult time, because I guess the transition to NDIS had huge teething issues and it was also a huge time of change within our dynamics for you and I. You were taking on your own care, so you were putting everything in place. You were responsible for accessing services rather than me. I was always there to help you, but it was always your goal to be independent and take those things over. Would that be fair? Would you think that sort of transition. It was a real snowball effect, wasn't it?
Sam:Yeah, absolutely, and I think it would be great to hear how you felt when you were rushed to the hospital and those things were put in place. Was it oh yeah, this needs to happen, or was there a bit of resistance in the initial stages of getting that support in place?
Di:There was certainly resistance on my part. I guess it was more the fact that I was always concerned that you weren't going to get the support you needed and, because of how I am, no one was going to do it as well as I did and I think that worried me. It worried me for you. I can't remember ever feeling that I was going to be put out of a job. I never felt worried about not being needed because I guess in some capacity as a parent and now a grandparent, you always have that to be needed sort of thing. So I don't know that it was ever that.
Di:It was the letting go that I found really difficult, that you may not have the same quality of life that it had with me caring for you. So that was really hard but also was not left a lot of choice. I had friends that really looked out for me and really made sure that I was looking after myself and impressed upon me that without my health I couldn't care for you in any capacity. I had to look after myself as much for myself, but even just to be your carer. So that situation was forced upon us. I would say that maybe this all should have happened earlier, but we never got that in place. I just did, and I'm really bad at asking for help and I don't think that's a good character trait for someone who's a full-time carer. As I said, I never had respite, I never took time away. I was always here in your carer, but that's not a good thing. That wasn't healthy for anybody.
Sam:No, and it definitely wasn't healthy for our relationship.
Di:looking back, Made it tenuous.
Sam:Yeah, so if we were already on edge with each other and we didn't have that space, it just exasperated it more Absolutely.
Di:I totally agree. And I think with then getting into your mid to late 20s it all evolved where I worked more because you were so much more independent and therefore our relationship became better. You went to university. You found a group of people that were really good friends for you during uni. So I think all those things started and then living with anyone. We needed our own lives. We needed to be able to have things to talk about, things to relate.
Di:So, with me working more, having that space of my own, meeting people, I didn't make friends in Perth. Friends I had been old school friends that I linked back in with and a few of them, but I hadn't made any new friends since I'd been in Perth. As the company I worked for grew, we got more people, so I had work colleagues who became friends and that sort of thing. So I think as a carer, that also made me better is not a good word because I don't think I was ever bad, but I think it made it. Maybe you felt more present, absolutely, and because you were so much more independent within your own self. And independence I don't mean actually doing things manually, independence as in going out, setting up your support, going to university, doing your own timetables, all those sorts of things. I felt more at ease to step away and it was nicer. We were better together, our dynamics were better and I think, if anything, as a carer, it proves that for anyone, you do need to reach out, you do need to access services and whatever's available and there is a lot out there available and we still, even with your NDIS, I still do so much that NDIS would do for you, but that's not likely to change until I physically can't, and I think, therefore, that changed. So therefore, I looked at the next steps to make our life easier.
Di:As I said before, we'd moved to a house in Perth. I sold that and you and I discussed and we decided to build a house that would make your life even as independent as it could be. So we built a smart home which has everything's accessible doors are wider, it's entirely flat, garden, everything so you can get around the house and the yard quite happily in your wheelchair Voice activated, app activated lights, lines, curtains. We haven't got other things. We can hook in televisions and sound systems at our own need. So having those things and then moving here, which is what five and a half years ago showed us how we'd worked with things that were purpose-built at the time.
Di:We made do's made an enormous change to you For sure. So having those things in place, it's easier for me to go places, not for extended periods of time, but it's easier. I don't have to. It's terrible to say, lock you in the house, but for security in the other houses we had, if you weren't going out, I'd have to lock you in and you couldn't get out unless someone was coming to get you and there was a key left out. Whereas you can get in and out the doors, you're free to do whatever you want. That has made a huge difference as well.
Sam:Yeah, because everyone should be able to move around independently in their own house and feel safe, and if an emergency did happen within their house, I'm able to leave the house when I need to without having to wait until someone come and get me.
Di:Absolutely. If it gets dark and you want to close the blinds and turn on lights, you can. They're all the things that you were never able to do and they're not much but they're a lot. Turning on a light for any able body that can do it without thinking. But when you can't do that, to all of a sudden have that literally at your fingertips or by voice. It can't be understated the difference that it's made to your life but also extending, like the ripple effect, to mine, because I don't have to worry if anything happens that you can't get out. Or video door cameras if someone knocks on the door you can see who it is, and they're really essential in your life for your day-to-day living and your security and your peace of mind, and that has been really important. And as technology advances, the possibilities there for who knows what, yeah always evolving kind of thing.
Di:You know you're lucky in the position that you can access and you've got a house that, if need be, those additions can be put to. For sure We've brought us to modern day.
Sam:And I feel a good direction to go in now would be your perspective of me going for job interviews and coming home and feel like I've done a good job in the interview or might be a shit interview, and it'd be good to hear how that sit with you or does it affect you or? Here we go again, kind of thing yeah, I don't know that.
Di:I thought here we go again. In that perspective, I have found it a really difficult time to navigate, hearing not only some of the interviews that you've been on that have been less than encouraging in terms of your disability. I guess it's always the most difficult to me to see you not achieve because of your disability from someone else. You always achieve like. You've been to uni, you've done courses, you've been on committees for disability. You know, even from a young age you're on Reach Out to help young people with mental health. You went through a leadership program as a young person from a disability. You've done all those things. But to see you I know it's put down or doubted purely based on your disability.
Di:I find fairly difficult to reconcile the interviews you've been on where people have said they've never employed someone like you, to people that say, oh, we can't have you because we have a duty of care and at the field therein you might deal with people who are volatile, not being able to access jobs, where you have to visit homes and they can't guarantee they're accessible.
Di:I can understand those practicalities.
Di:What I don't understand is why they can't work with you in some way to slightly change how they do something to get the same outcome. I've worked with a company where people with disabilities were not excluded because of their disability and they've worked with them, even on a training program, to say let's work for a couple of weeks with this, see if we can work around it and get the same result. And no one's offered to do that for you. No one said, well, hey, you can get the same result, but let's find a way for you to get there. That's a bit different but would allow you to do the job. And there's a huge part of me that knows you haven't got a job because of your disability and they can put whatever spin they like on it. They can say you don't have enough experience because really you haven't been in the workforce full time and you can go and fight these things and you can say you show me why this person got the job and not me, but you have to fight for everything, sam.
Di:And I think there's never an easy route for you and not just you, but people with disabilities. If you don't tell people when you go for an interview that you're in a wheelchair and you turn up, there's got to be a certain amount of oh holy crap, we're on the back foot here. Now we have a person with a disability. We have to tread really carefully here, because A they can't be seen to be discriminatory, but I still think they're always looking for a reason not to employ you.
Sam:Oh, absolutely Because. I guess, I'm saying about myself. I come with baggage, I've got someone else extra with me. You know, it's not just straightforward walk in and here's the job, kind of thing. There's logistics that come with hiring me and I understand that, but also it's a bit of BS as well.
Di:Oh look, and that's absolutely true, and I can only look at it from a point of view of having had a manager who used a wheelchair in the company I worked for. The directors of the company were quite happy. He was up front in the interview and said look, I'll probably use my sick leave, certain health things, and I'll need accessibility, but that can be funded. They had all the necessary things in place. It was an engineering company, so putting in small ramps, making it all accessible for him within a matter of weeks, and it didn't cost them anything except having a few workmen around to do it.
Sam:And that's the thing. That's not even a health area, it's engineering, and the jobs I'm applying for are in the health sector, which is even more disgusting, to put it nicely. And I say that because you're in engineering. They can't be accessible, but it just shows it doesn't matter what sector you're in. There's always going to be some sort of discrimination, and you would expect it less likely in the health kind of realm. It doesn't make any difference at all, which is even more of a head spinner, yeah.
Di:And I think I've said to you before you have two of the three things that people look to not employ. One is you're a female. Two is you have a disability. The only thing is you're not ethnic. If you were of another colour, another nationality, and that's a very broad and general statement. But you've got two of the trifecta.
Di:I mean, I really think that from a parental point of view, that's been really difficult to see you not achieve working as a social worker but at the same time, hats off to you. You've done different ways. You've done courses so you could be a volunteer. You've done other things within that same community health professions. So hats off to you. And we have talked about you doing other courses to take you in another direction. But I just find, is that just another course for you to get more knockbacks in another field? You know, yeah, absolutely yeah.
Di:And the longer it goes on, the longer you're not employed, the more difficult it becomes, and the older you get and the less experience you have the vicious circle. I don't know the answers and I've spent more than one sleepless night just trying to think of ways that could make it work. And I guess this is a thing with disability is. You have always got to be seen as being proactive about your own situation because no one else does it for you. No one else makes it easier, and I'm probably harboring back to my. You don't ask people for help because you do it yourself, but that's sometimes how you feel. I guess the hardest thing is people go oh I'd fight that. But you also can't do it all the time because all you do is fight. You fight the system.
Sam:You kind of like really got to choose your battles. Some are definitely worth fighting for, but some are just almost like a lost cause.
Di:Yeah, very much so and, as you can hear that really that's really hard to watch. That's extremely hard to watch that your child has to fight for everything, that, everything you do. You're so tough and you're so strong, but you have to be, because it's not plain sailing. But I tell you what you give it a red, hot crack for all the fact that I go, I watch you fight and the tears and the frustration when you don't get a job and yet another excuse as to why you don't. And you've proven you're a goddamn good employee. You turn up to work, you do your work, you're good at what you do. You've been told and I don't think it's because you're not good at what you do, You're tough and you keep fighting for it. And you think of all the people out there that you know. I mean you only have to look at the statistics that are rattled off with Dylan Alcott when he talks about people with disabilities and those people that have voices and create their own in.
Sam:I feel like in this day and age, you know, I guess, normalising people within media, within just in jobs, which is so important to do, but we've still got a long way to go, oh absolutely, and I guess that's what I was saying about fighting and advocating.
Di:And when I say fighting, I don't mean literally, but continuing to show up and be as you say, be present and be tough in what you do. And you do have people. I mean, when we first started on this 24 years ago, I don't, I reckon I could name one person that I'd seen on television in a wheelchair, you know? No, actually I couldn't name them. I probably couldn't, if I'm honest, and that's not because they just weren't there. But now you have people like Dylan Alcott, like people around Perth that advocate for other people in the disability sector.
Sam:The space yeah, For sure which is so important.
Di:It's hugely important, and not just employment in what were called sheltered workshops. People are with able-bodied people, with like-minded people. The new wave of those people with disabilities and fighting for are people with all sorts of neurodivergent issues and you know they're going to need their advocates to them. But yeah, to see those people in the media now and people like you that step up and advocating for those things as well.
Sam:I guess that's why I started this podcast to break the stigma, to normalise conversations around disability and pull out things that aren't right in society, that people get treated and known differently.
Di:And I think that's really important to make that. But it also becomes really, I guess, emotionally tiring because you will continue and I guess that brings us to where we are in moving forward with aging. That's going to be something that you're going to have to do continually. You know there will certainly be things that are easier as time goes on because society changes and we learn so much more, but definitely the age and my ability to do day-to-day care for you, that will fall on you accessing more services. You're a lot better at asking for help and seeking out those things than I probably ever was. Always been your life, I guess, to do that.
Sam:Yeah, and I guess when I do reach out for support, you know organizing my morning personal care because I don't want to put more pressure on you, like with your back. That's really important for me to have that in place, because if we can get it in place, like why wouldn't we or why wouldn't I have them in place?
Di:But I guess what you talked in your episode about, what your care would look like, what it would mean, because, as you say, you have the ability at your age at the moment to have girls who are at university or work part-time to support you. But as you get older, what will those things look like when you can have someone who's in their 20s now to accompany you to celebrate someone's birthday or whatever you're doing? Conversations and current day issues what will that look like when you're 40 or 50? You're probably not going to want to be talking to not talking to them, but socialising like your social things. You will want like-minded people and that usually isn't as you're a 50-year-old or 22-year-old. Besides, the way conversation and language is changing, you possibly wouldn't understand them. No, that's exactly it Finding that now words that are used are different from what you and definitely from me, but I have no doubt that you will navigate that.
Di:The hardest thing, I guess, is that for me, I have no problem with dying. I do have a problem with dying, particularly imminently. I'm very pragmatic in that, in a perfect scenario, humans are allowed to age and get old, but no one gets out of life alive and I'm quiet, okay, dying and it doesn't scare me. What concerns me is what that means for you, and that is an unknown. That is something that particularly there's a lot of boomers or aging parents that care for children and even for spouses, but I guess as a carer, we can't forward plan that a lot. All you can really do is get all the tools that you need, all the information you need. You're good at that. I don't have any doubt that you will be fine to do that. But the hard thing is we can't do it now. We can't have those things in place for 20, 30 years. They're going to have to evolve and I guess we've never really looked at shared accommodation for you.
Di:I have a brother in the disability sector who builds fantastic group homes on the East Coast for all sorts of disabilities, for all sorts of people, and they're independent units and houses purpose-built for people with disabilities. He's amazing and he does really great work. But we've never really looked at that because we've always had our home. You've had a family and support, I guess. So will you need to look at something like that. Is it available in Perth? What sort of housing and therefore support? He does houses of five people who all have their own units and homes and they have one or two support people that work between them. There's lots of things that are available and I know my friend who's no longer with us, who was also a carer.
Di:Her and I had discussed using our knowledge and we've got friends that have all sorts of professions and pooling our general knowledge and our disability knowledge. We have friends that work in finance and in charities and all sorts of things, pooling that and using that to some good. Unfortunately, when she left us, so did that idea, which I've just that idea, which I've just struggled with picking up again, I guess. But is that a direction we're going? I guess when we first started, the options for you would have been aged care, because that's where people that have disabilities that don't have anywhere to go. That's what happened. You know, the people, even with debilitating disease, like ms and you know, had young people that ended up in aged care where, yeah, which is, which is just not what life should be for those people.
Di:Hopefully it's evolved a lot. I can see you fighting tooth and nail that that's not your life. Your life ends up. But they're the really hard and we do discuss it and we do talk about it that we'll do everything to have whatever we need as best as we can, when the time comes.
Sam:Yeah, for sure, absolutely. When Nana was around and she would say something about after she's gone, and she was like I'm sorry, sam, I know we didn't like to talk about death, but it's my reality kind of thing and, yes, it just reminds me of Nana.
Di:Because now I'm saying it to you yeah, exactly it is true, it's not only with my ultimate death and leaving this world, it's if I'm physically not able to care for you, or mental capacity. I mean, we don't know how we're going to age. I can say, hey, I'm really okay for my age and I exercise and I do this and I'm quite capable around the house and we don't need services that NDIS can provide, like in the garden, I'm really fortunate, touch wood, I can do all those things. But it's not only if I die, it's if I just can't do those things. I guess in some way then we can put those things in place.
Di:But you know, what do other people do? How do people? I just feel for people who can't advocate, whose children aren't able to do this all themselves, who can't be at least marginally independent, independent of thought, if not body. I mean there's some really tough situations out there and I don't know that there are answers, but that is our reality, that's what we face. But we're certainly not alone in that and we certainly have people that will help. But there, no answers, sam, and I guess all I can really do to round it out is take back to the part one we do of this and say you will always be okay yeah, for sure, I may not feel it straight away, but I might take a little while in fact I feel a little upset if you just picked up oh well, there's another problem my hand's off, I can't.
Di:I want you to be able to. We all have to move forward. I mean some people it's more difficult than fathers for all sorts of reasons. But you know, I look at as I get older, at people that just random stories, like a gentleman that's been married and just lost his wife, that I'd go to gym and they'd been married for 60 years. What do you do when someone you've loved for 60 years isn't there anymore? I mean, you know, and he's just at 80, pick up his life and move on. Humans are incredible with what you can endure. I think you've proved that and I have no doubt that you'll continue to prove it.
Sam:Thanks, mum, I really appreciate that.
Di:I think no doubt that you'll continue to prove it. Thanks, mum, I really appreciate that. I think I need to go and cry properly. I guess because I don't look back I found this really interesting is because I don't tend to look back. You know, oh, what have we done? But when I've looked back I have to be proud of what we've done.
Sam:Oh, absolutely, and I was going to ask what are you the most proud of in me and in yourself? Even like just editing the episodes? I've really there are things that I've forgotten, just things that I obviously forgot about or didn't know about, or whatever it was, and I think having this conversation on these episodes it has really enlightened me to what we have been through and what we've been through together and we have been through a shitload together, to say it lightly.
Di:Look, I agree, we have been through a lot together. What am I most proud of? I'm just proud of you. You're amazing because you're you. You're not amazing because you have a disability and you get out of bed every day and, gee, aren't you great. You're just amazing because you just keep batting. You don't let it get to you. That's what I'm proud of. I'm proud of both my children because they're good people. I'm proud that you're a good person. You're a good friend, from what I see, and you don't sweat the small stuff so much.
Di:Proud of myself, I don't really think about it all that much. I'm proud that? I don't know. Am I proud because we've done it, but we continue to do it? That's. The thing is, this doesn't end. Podcast finishes, but this doesn't end for us. I'm not crying about that, but we continue to front up every day. I think I'm proud that we don't let this own us. We own it and all the things that have happened along the way that we've talked about. We've owned it and I don't think we're too precious about it and I don't think we're morbid about it or, gee, aren't we good? We're not. You know we're not out there and, yeah, beating our chest. But I think, yeah, there's a lot to be proud of, there's a lot to be. There's a lot to be proud of in our relationship as well. I think, as a mother and daughter, I think we, for the life we live together, we should do okay.
Di:you know better than okay, absolutely we've maneuvered all these things into a really good place, haven't we?
Sam:definitely, yeah, absolutely. So I reckon that's a great place to finish on this final episode. Mum, thank you so much for being on these three episodes. I've really enjoyed you being on and talking about this kind of stuff with you. It's been really good and I'm sure that the listeners have gained a lot of insight into our lives and hopefully, if you're a mother or a parent with a child that has a disability, hopefully it was insightful for you in some way and helpful. There's light at the end of the tunnel, kind of thing.
Di:And honestly, Sam, if anyone needs to reach out or talk about issues or whatever. I'm not an expert and I don't claim to be, but sometimes there's just things as a parent and carer of a child with a disability, there's just little things along the way, and I'm happy to. As I say, I'm not an expert. I'm not saying that I can help in any way, but sometimes a little different perspective I can perhaps relate where you and I have been with that I'm more than happy to do that too, yeah.
Sam:I love you lots, mum. Love you too, sweetheart. Yeah, we need a drink after this I think I do all right. Bye darl' okay bye, and that's it for today's ride. Thanks for rolling with me. Make sure you're following on instagram for all the latest updates and, if you're loving the chat, don't forget to follow the podcast on your favourite streaming platform. Stay safe, everyone. I'll catch you next time.
