Mentorship, Mobility and Knowing When to Use a Wheelchair: With Jane Wardlaw
- Peta
- 4 days ago
- 18 min read
Jane Wardlaw is a disability advocate, mentor, board director, and member of the NDIS Independent Advisory Council, with lived experience of limb girdle muscular dystrophy since childhood. Diagnosed at eleven alongside her two sisters, Jane grew up in regional Tasmania at a time when disability was poorly understood and support systems were limited.
Over time, her changing mobility, experiences of discrimination, and denial of choice and control pushed her into advocacy, not by ambition, but by necessity.
In this episode of The I Can’t Stand Podcast, Peta sits down with Jane to talk about mentorship, mobility, and the deeply personal question many disabled people grapple with: when is the right time to start using a wheelchair? Jane shares her honest reflections on internalised ableism, fear, safety, and the moment she realised a wheelchair could be a tool for freedom rather than loss.
Together, they explore why mentorship matters so deeply for disabled people, how support systems can either empower or undermine independence, and what it means to carry disabled voices into decision-making spaces. This episode is for anyone navigating disability, mobility changes, the NDIS, or big life decisions who wishes they had someone to talk it through with.
Listen on:
Key Topics Discussed
In this episode, we discuss:
• Growing up disabled in regional Australia
• Knowing when to start using a wheelchair
• Wheelchairs as tools for safety, freedom, and independence
• The importance of mentorship for disabled people
• Choice, control, and navigating the NDIS
Transcript
00:00:02
Peta: Hello, and welcome to the I Can't Stand Podcast, the podcast exploring what it's like to live with a disability. My name is Peta Hooke, I have Cerebral Palsy and I'm your host. Today's guest is Jane Wardlaw. Jane lives in Tasmania and has lived with lim girdle muscular dystrophy since childhood. She was diagnosed at eleven alongside her two sisters, growing up in a time when disability was poorly understood and support was limited. In this conversation, Jane reflects on growing up disabled in regional Australia, internalized ableism, and the sense of urgency that shaped her life choices. She shares why she chased big dreams while she could, including working as a governess on remote cattle stations and how that experienced reshaped her understanding of independence and freedom. We also talk about mobility and wheelchairs as tools for possibility and how being denied choice and control pushed Jane into disability advocacy. Now, Jane is a member of the NDIS Independent Advisory Council. She speaks about power, the importance of mentorship, and what it means to carry disabled voices into decision making spaces. So without any further ado, here's Jane.
00:01:52
Jane: My name's Jane Wardlaw and I'm situated down here living in beautiful lonste And Tasmania on the banks of the Kanamaluka, which is the Aboriginal term for the Tamar River.
00:02:09
Peta: That does sound absolutely beautiful, a little haven down there for you, Jane. Tasmania is such a beautiful area, but it is separated from the mainland, so I'm always curious to know what it's like to be disabled or have a disability when you live away from major capital cities and things like that, which I'm sure we'll get into, but I want to start at the beginning because I know some people might not know who you are, Jane on this podcast, So tell us a little bit about yourself. I know you were first diagnosed with your disability at eleven, is that right?
00:02:48
Jane: Look, it was about when we were when I was about eleven. So I have two other sisters, an older one and a younger one, and we grew up on the beautiful east coast of Tasmania. So my parents were farmers and my older sister was complaining that she was, you know, had really saw aching legs, and we were sort of always running last in races and things like that. And so Belinda had a biopsy done on her calf muscles and through that process they sent us over to Melbourne to be diagnosed, and it turned out that we had a type of muscular dystrophy called lim gird or muscular dystrophy. This is going back in the seventies, so back in those days. They sent us home and they said to Mum and Dad that, you know, make sure that your daughters don't get fat and that they do lots of exercise.
00:03:54
Peta: So all three of you have muscular dystrophy.
00:03:57
Jane: Yes, yes, so you know, I think we're fairly unique. And it's interesting growing up with two sisters with muscular dystrophy as well, because we all sort of it plays out differently in each of our lives. But I've found in later on in life though, or throughout stages. So I always think that with muscular dystrophe, you go through stages where things are on an even keel, so to speak, and you're managing reasonably well. But then you're slowly but surely the condition creeps up on you and it's a degeneritive condition. So you go from walking to know a gates, and then you move into using a walking stick and so forth. So we're all wheelchair users. We all require quite considerable amount of support for all our daily living needs now, and it can be a little bit discerning too. I think when you're losing function and managing that and dealing with that and trying to keep up that positive outlook on life.
00:05:15
Peta: Was it a bonding thing to know that your sisters were going to go through the same thing you were, or was it something that pulled you apart? Because I think people deal with their disabilities in different ways, and I think it would be an incorrect assumption to think that you would all deal with it in the same way. You know, you're all individuals, and I think, of course sometimes there is a grief with having a disability, but outlook on life and personality varies or can vary from sibling to siblings. So was it a supportive, positive thing that all three of you had muscular dystrophy or was it a different experience.
00:05:59
Jane: That's a different good question to answer. But what I can say is is that our parents, particularly my mum, you know, they really supported us to be as self determining and responsible and to make our own choices. So our parents really encouraged us to be our independent and individual selves, and you know, they allowed us the opportunity to, you know, dream big, and you know that we could do whatever it was that we chose to do. And I think that determination and that tenacity I think I need to owe to my parents.
00:06:45
Peta: Yeah, so what did you think your future was going to be like? Like, obviously you were diagnosed at quite a young age. Did you ever think about the future and what your life might look like as a disabled woman.
00:06:59
Jane: Well, I must admit I never really saw myself as a disabled woman. I did not want to be a disabled woman. And now I realized that's ableism. I had, you know, ableism really badly, and I'm afraid people might find that pretty terrible thing for me to be that judgmental. But when I grew up, disability was a completely different era, and I just didn't want to come across as somebody that needed to be treated differently. I fought really hard to be treated as just as normal as my friends were, and so I really wanted just to be accepted as Jane Wudlaw and I wanted to be seen as somebody who was determined and successful, you know, like I wanted to be working. I wanted to have dreams and follow those dreams. I lived in your neck of the woods for a little while up in Queensland, and I have to say it was probably one of the loneliest times I ever had. And I was only about twenty two twenty three at the time, and I thought, I think I'm going to have to go home because I was becoming slower and I was really struggling with it on my own, and I thought I needed to go home to be around their family for that support. And it was then that I thought, well, look, if I go back to Tasmania, that might be it. You know, I won't be going anywhere else. So that's when I thought, what is it that I really want to do before I go back to Tasmania, you know. And I really did some soul searching, and this is one thing I realized I do throughout my life when I come to a crossroads. I do a lot of in Cornel looking at myself and I thought, I really want to be working on cattle stations. It's all I wanted to do all my life growing up on a farm. I wanted to be a gilaou and I'm the most unlikely person to be a Gila roue. You know, I can hardly sit on a bloody horse level. But I had it in my mind. So I went. I trotted down to the shops and I bought myself for Queensland country life and I found a job working on a cattle station as a housekeeper. And in those days I was still ambulant, but you know, I was getting worse and I really should have had a walking stick, but I didn't. And that's how my journey of following my dreams and I ended up working in the outback for about three years, governessing and working on various stations. It's great.
00:10:01
Peta: I'm not surprised that someone like you decided to take on a really really big challenge, even just for yourself to prove that you can still do it, you know, and taking on something to be in a remote area like being a governess in North Queensland is a huge feat to really back yourself and take on that big, big challenge. What did that experience teach you? Because I know that you worked with kids with disability, is that right?
00:10:36
Jane: There was one child that I worked with that was with down syndrome divine child, you know, and the family were really struggling. Look what did I learn from that experience. I think it made me realize that you needed to actually follow your dreams. And there's nothing more exciting than the lessons of following your dreams and achieving your goals. I like to have something to work towards, and I love to live the dream.
00:11:08
Peta: It's interesting for you in your context, did you feel like that you had a ticking clock, that while you had ability, that you needed to achieve certain things while you could.
00:11:23
Jane: Absolutely you hit the nail on the head. We were all told that we'd be in wheelchairs at a young age. In fact, our life span wouldn't be very old at all. From what I understand, I can't remember the words specifically, but it was like a ticking time bomb, like I had to hurry up and live as much life as I could while I still had the ability of doing what I could. And I always used to think too, that being in a wheelchair was the worst thing in the world. And in fact, I was so stubborn about using a wheelchair that I really put myself into some dangerous situations. I'd fallen over so many times and broken my ankles and found it really hard to get around that I had to succumb to the fact that it was time to use a wheelchair. It was year two thousand and I'm living out in a little country town called Mulowa, about five hours northeast of Perth. So the wheelchair arrives and I'm in my little house and I thought, right, well there it is all right. Well I may as well jump in it and use it, so I'll go out to the clothesline. So I jump in it and I head out to the cozine. I thought, oh gee, this is not too bad. I think I might go for a bit of a walk. So I'll go off and I keep on going and I go down the driveway. Well half an hour later I was Withy around the streets of Maloua and having a look around. I thought, this is incredible, and it was really amazing, and it opened up so many more possibilities indoors of freedom. And my mum kept saying to me in the lead up of considering getting a wheelchair, see it as your professional tool to do what it is that you want to achieve in your goals.
00:13:26
Peta: I think a lot of listeners would relate to that story. Jane, I get quite a few messages in my Instagram saying, Peter, I think I'm at the stage of needing a wheelchair, but I don't know how to cope with it. You know, so many people in my family are so passionate about me walking and keeping up my mobility. You know, my physiotherapists are constantly trying to keep up my mobility. And you know, of course we're all biased in our perspective, but as somebody who's been in a wheelchair or an electricalal chair since she was five, I kept saying to me, it's a tool for your freedom. It totally defines my life. That's an obvious statement. But without that, I wouldn't be me. And I think I would love to hear from you what you would say to people that are still hesitant to make that choice for themselves.
00:14:25
Jane: I've had to withhold my opinion sometimes about telling people that they need to have a wheelchair, because I know that you need to go through the process. It really has to be your choice and your decision. But what I can tell you is is that or to your listeners, really think about what the freedom the wheelchair will be able to provide you and you'll have peace of mind. And there's no thing more satisfying than having them being safe, really, and your doors will open to so many more possibilities. But take your time, think about where you want to be, what you want to do, and don't give yourself too much of a hard time. But it's not the worst thing in the world. In fact, it's probably one of the greatest inventions we have in modern times. I think having a great wheelchair.
00:15:32
Peta: No, I agree with you, and that's where I find it fascinating. Vias. I read in my research for you, Jane, that you resisted to become an advocate, but it was only until that you had to advocate for yourself that you realized that you had to do this. Can you talk to me about that?
00:15:51
Jane: Well? Yes, So I spent about eight years living in Western Australia and I left Tasmania ten years previously walking or with a walking stick, and I came home to Tasmania with a wheelchair. And in Western Australia they had a fantastic individualized support package program for people who to self manage, self manage their funds and self direct their own lives like employing your own workers and things. To me, I thought that was what it was like in Tasmania and everywhere else. And the greatest surprise I had, and I shouldn't have been, is is that no, they wouldn't let you self manage your funds. And that really got up my nose because I wanted to make that choice of staying in Tasmania and being able to employ my own workers, rather than being told by a government legislation that dictated that it was providers were best placed to look after you, not you. You didn't know how to look after yourself. So that really I was working on that project to try and change the mind of the state government. And at the same time, I'd been offered an opportunity to go and do a bit of a consultancy on a nonprofit organization that had federal and state funding to provide support services for people with disability, and they were offering like a day support program. So what I love doing is going in and talking to people and finding out their opinions about how they think their organization is going. I love to identify need through the vision of other people and then come up with strategies with them. About how to address those needs. And I was leaving the venue to get into the wheelchair taxing, and as I was leaving, there was a fellow that was coming in with his wheelchair and I recognized him from fifteen years ago, you know, when we were probably a bit longer than that, but when we were about fifteen, I was doing a Duke of Arenberg award at school, which meant to do some community service hours, and I had been allocated to go and work in an institution for disabled children. And there was a fellow who's the same age as me, and we became quite good friends. Our lives went such different directions. He remained institutionalized, but I'd had all this wonderful freedom and self determination. I could not believe that he was living in an institution and still being institutionalized. During the day, the weight of injustice was so heavy on me as a woman with disability, I thought, I just can't let this be. So I got very involved in disability politics from that point forward. I wrote a briefing paper about the issues, and I made an appointment to visit the Minister and talked to her about a whole range of things, as well as I established a network of people around me too. So I was really lucky because I reached out to National Disability Services not knowing much about who they were or what they were. But I kept hearing about this woman, Margaret Reynolds who was on the radio and she was on the state manager of National Disability Services. So I thought I'll buger it. So I rang her up and she is the most incredible woman I've in my professional network that I've met, and it's thanks to her really supporting me. She was my mentor. And at the same time, I tried to get into politics, local government politics, so I pursued that. So I had these massive, big stickers on the back of wheelchair taxis Vote one Jane a new voice for Lonceston Counsel.
00:20:31
Peta: I love it. I love it advertised where your people are? I love it. That's ingenious.
00:20:37
Jane: And I didn't do too badly. I didn't win, but I didn't do too badly.
00:20:44
Peta: I can see why so many disabled people end up getting into advocacy because we are faced with a level of injustice, whether it's for ourselves or it's our peers. We see it every day, you know, it be on social media or interacting with the communities in our lives. Do you think having your disability has changed you and you're on your perspective or do you think regardless of whether you had muscular dystrophe and being diagnosed at eleven, do you think you would have been a person that gravitated to advocating for people and into politics.
00:21:27
Jane: Oh, look, okay, I actually think I probably would have been a right old cow. I don't think I would have been a very nice person. I don't know. I don't really think about what would the abled body Jane be. Like I now realize, and I realized twenty years ago that my grat when I got into disability politics because I like to call it disability politics, did actually I really have a lot of power. I want other people to feel that power, not just for me, but for themselves. There's so many opportunities in the in our sector to be our best selves, but to flourish one.
00:22:18
Peta: And I can see that your career your very career driven. And I know you're appointed to the NDIS Independent Advisory Council, which was a career dream of yours. But what does that role at the council, What does it allow you to do to support our community.
00:22:39
Jane: So being on the NDIS Independent Advisory Council to me, is like a career goal. It's like the pinnacle. I was so absolutely thrilled. It's given me the opportunity to network again with key stakeholders on the ground and allow tells me to go out and meet with people with disability again. And I love to listen to what people have to say and their ideas for change, and then we get the opportunity to actually take that back to council and talk about and report on that. And I find that very powerful because not only if you've got the ear of the CEO there of the agency, but you've also got the chairman or chairperson of the NDIA board and although that they have the final decisions, we can still be heard. And to me, that's really important.
00:23:44
Peta: That is remarkable that you have that role and that ability and that connection with the disability community. I think sometimes when you're disabled, if something happens to you, or you're finding in particular, or there's a real big injustice in your life, you can sometimes feel like you're shouting into the abyss, and no matter how much noise you make, you know that the real people who can make change, aren't going to hear you, or the general public don't really understand or care to the level that they would if it was happening to them. I don't really have a question, but I just it must be remarkable to know that you're actually making change every day and that you're allowing disabled people to feel heard.
00:24:38
Jane: I just think it's really important. I've always I didn't I don't want to be an angry disability advocate because I don't think people listen to angry disability advocates and they won't listen to emotional disability advocates. And I think what I love doing, and I've been a men talk for younger people with disability her looking for work, and it's really interesting because they keep you on your toes. To me, what I found was is that most young people with disability today don't have a lot of hope for the future, and nobody's really spent a lot of time on talking to them about their strengths and being positive. And I pride myself on trying to acknowledge that, yes, that's an awful thing, but how can we turn this adversity into something that is going to be your strength.
00:25:49
Peta: And for anybody who is listening that thinks that really resonates with me. I don't really have much hope, particularly with employment like I've I've certainly been stuck in jobs before, sitting there with three degrees, thinking I'm never going to get promoted. I'm always going to be, you know, in those low level jobs because of my disability. Do you say, as a mentor to those.
00:26:15
Jane: People, Look, I so understand that. Oh my god, I've worked my guts out when I was in the West to prove that I was just as worthy as anybody else for a promotion, and it never came. And I realized now it was blatant discrimination and ablism. It was that good old bloody ableism. So what would I say to people? Now, get yourself a great mentor and surround yourself with people. And one thing I don't think we do very well in our society is is that we're not providing people with tools to network with one another, believe it or not, just let alone. Having all this social media, we're so disconnected, but we don't do enough positive thinking tools. We don't have enough networking with personal development. I love personal development because you're always growing.
00:27:26
Peta: You've mentioned quite a few times talking to me today Jane about the importance of mentorship, and I agree with you. I have an informal mentor that I speak to every month and it's really really helpful for me to keep on track. But for those who are listening who thinks I really want to mentor too, but I don't know where to look. Why do you even start to find someone that might be right for you or to be open to mentoring a disabled person.
00:27:56
Jane: So it's just like with Margresh, you know my me. I heard about her, she was on the radio all the time, so I thought, I will bug it. I'm going to give her a call. It's as simple as that. It's about having the courage to reach out to people who are experts in your field. Be brave because there's nothing you'll never make a mistake by reaching out and being kind to other people and saying, look, I'd really love to meet you and talk to you more about how you've got to where you are. I'd love to do something like what you're doing.
00:28:38
Peta: For listeners who are navigating the NDAs, what are some small practical things that they can do to feel more in control? Because even I at Todds can feel quite overwhelmed.
00:28:53
Jane: Look, I have to say at the moment, it's not a very nice time to try and navigate the NDA. One of the things I'd love to change, and I keep saying it in the wherever I can, in whatever forum I can, is that we need to start making sure that we've got better communication with people. So for somebody now that's trying to navigate the NDIS, I would definitely be asking the NDIS for some support coordination hours and then I would be doing my research. There is a provider find a tool on the NDIS website. I do think there could be some out of date numbers on there, but I would be searching to try and find some support coordinators out there to help you build your team, to help you navigate the NDIS and connecting your community. And I know that sounds really daunting, but the support coordinators to get that funding in your plan, that is essential. In fact, I'm adamant that I've always believed that I think every first plan should have at least sixty hours of support coordination, not ten hours local area coordination. I think you need to have up to sixty hours of support coordination in your first plan to really get you ready to launch you into self determination.
00:30:49
Peta: Finally, today, those who listen to the podcast regularly will know I always ask this question as a disabled person. It won't surprise you to know that I get very interesting questions by strangers when I go out in public that often really illustrate their ignorance around disability. Ableism, as we've spoken about, is prolific still in our community. Unfortunately, if I could give you a magic warned and stop strangers asking you one question in the street, what would it be?
00:31:29
Jane: What's wrong with you? I get it all the time. What's wrong with you?
00:31:36
Peta: Oh?
00:31:37
Jane: I feel sorry for you? D and I'd saved to people. There's nothing wrong with me. I'm one of the most luckiest women in the world. I wouldn't change a thing.
00:31:52
Peta: Thank you so much for listening to this episode of the I Can't Stand Podcast. If you enjoyed today's conversation, the best way you can support the show is by sharing it with a friend or posting about it on social media, and if you have a moment, leaving a rating and review helps more people find these stories. Don't forget You can always send me an email I Can't Stand Podcast at gmail dot com. Or you can follow me over on Instagram at Peterhook. I'll see you next week. I would like to respectfully acknowledge the wondery and bunn wrong people of the Call and Nation of which I record the podcast today, and I pay my respects to both elders past and present, along with and especially to those in the First Nation's communities who are disabled themselves
Comments