Growing Bold with First Nations Leadership

Additional information

• Renay on learning to lead
• Renay on accessible fashion

Growing Bold with First Nations Leadership:

Pete: Welcome to the Grow Bold with Disability Podcast. Brought to you by Feros Care. A podcast dedicated to smashing stereotypes and talking about the things people with disability, care about most, to help us live bolder, healthier, better-connected lives. I'm journalist Pete Timbs.

Tristram: and I'm Tristram Peters. I work for disability service directory, clickability, and I’m a wheelchair user living with spinal muscular atrophy.

Pete: Welcome to today's episode of Grow Bold with Disability. Unfortunately, Tristram can't be with us today, but he'll be back next episode. Today's episode of Grow Bold with Disability is Growing bold and leadership, and our guest is Renay Barker-Mullholland a proud First Nations woman from Birpi and Daingatt nations who is disabled with both physical and psychosocial illnesses. Now, in this episode, we'll learn about what it's like growing up in a single parent household and how moving in a state away from close-knit family was a game changer for Renay and helped her find her inner strength, her independence, and to become what she calls the queen of the outcasts. Renay, welcome to grow bold with disability.

Renay: What an intro.

Pete: The queen of the outcasts. We'll get to that a bit later. But I do love it. It's a great nickname

Renay: I wear it with pride.

Pete: Yes. So, you should. Now, let's start way back in your childhood. Okay? So, your mum became a single parent when you were young. What did that mean for your family?

Renay: Um, for us, it meant as a family. Emotionally, we became close. It was like me and my mum and my brothers against the world. And, you know, we could defeat anything with just the four of us. But in the practical side of things, it was difficult. So, um, we were very poor. Poor, literally. Um, my mum would often go without meals because I had bigger brothers. They were twins, and they ate like, bottomless pits. So quite often, my mom would go without dinner or that extra meals so they could have those things. And all the practical things that come with being poor. I don't think we owned a car throughout my entire childhood. So, it was public transport or nothing.

Pete: Did that make you feel different to others around you?

Renay: um I was lucky in that I had my family around me, and so, you know, my best friend lived next door, and my cousins lived up the street, so I still had a network. But it was really isolating in the wider community because I knew that I was different. I'd always be catching the bus home. I'd never get picked up by someone. If someone came to school in a car and was coming to pick me up, you knew that something had either happened, or it was an exciting moment when someone came in a car. So yes, exactly tyou knew something was going to happen. And so, you know, I kind of I remember having memories of people inviting me to do things like go horse riding or, um, and while we might be able to get the money together to go, we wouldn't physically be able to get there. So, it was obvious. I was aware of it from a young age.

Pete: Mom was obviously bringing up you and your brothers, but she was an amazing person. She volunteered to local community centre. She was advocate for tenant's rights in the community housing. She organised support groups with domestic violence survivors and ran the committees. That's just amongst some of the things. How did her leadership within the community rub off on you?

Renay: That's a good question.

Pete: Did you even realise what it was?

Renay: No. No. You know, I cared for my mum for a long time after at the end of her life, and often people would say to me, you know, you're so amazing what you do for your mom, and this is such an amazing thing to do, but for us, that's what that's what you did. You know, when people needed help, you help them. And if I've got two of something and you need one of them, then there's no sort of question that you get that support. So I think it was kind of like a situation where I just knew I was just surrounded by it, so there was no formal sort of lessons on what this meant, But I could see other people being impacted by her advocacy and her her spirit. So, I think it kind of just rubbed off on me.

Pete: Was it just mum? Or were their aunties and other people within the family who were similar in their sort of leadership roles within the community?

Renay: Yeah. Look, my aunties are some of the most amazing women in the world, both on my mum's side of the family and my dad's side. I've got so many great examples of the matriarchy being I feel like the matriarch you saved me from, um, from a life that could have been quite different. But having the love of these women and seeing women in roles in leadership roles but also seeing women in roles around the home modelled every kind of person that I wanted to grow up to be. There was an example of that in front of me. And it's an amazing thing when you look back on it and think about the number of women and family and support that I saw in action. Yeah, it certainly gave me a great base to start from now.

Pete: When you were young, you moved interstate. As I mentioned in the intro, and amongst other things, you attended at least five different schools in about five years, looking back. How do you remember those days?

Renay: Um, it's it's kind of hard to look back because there were experiences, I had that were negative. Um, and you know, there was bullying and things like that, especially. I remember being bullied about wearing the same pair of pants twice in a week, and I thought it was strange because you know, who bullies somebody about wearing the same the same pair of pants. But also, it showed me that negative side of being the new kid on the block. But it also really developed helped me develop resilience of being able to stand up in front of, you know, when they are the new kid and you see it in the movies and all the time, you're the new kid and you've got to stand up and give an introduction of yourself. And that was like a baptism of fire into public speaking or advocacy, because I had to stand up and present myself and my identity in front of these people and getting to practise. That was great. But I know you know, now that I'm a parent, I recognise the benefits of being able to stay within a certain environment for my Children. I see the benefits of being able to maintain that consistency in my schooling.

Pete: Interesting, because you moved around a lot and it's obviously made you the strong, independent woman that you are. I know you wouldn't highly recommend moving around maybe five times in five years, but it's interesting that you think that stability is probably little bit more important. Is that a sort of generational thing, perhaps as well. Or is it just you didn't enjoy it that much? You got not so great memories of it.

Renay: Oh, I mean, if you ask my partner, he'll probably tell you that I still do it. I still make him move around a lot because we have. We've lived in a few different places just as a family. But I think I think it's a personality based more than anything. My kids are different people to me, obviously. But you know, their personalities are so different that I think I'm just lucky to be able to respond to that now, whereas maybe my mom didn't have a choice, whereas now I have more of a choice around those things. So, I don't know. I would always recommend going somewhere you haven't been before. And just even if it's, you know, the next local town that you've never stopped in. And even if you just stop there for 10 minutes and have a look around, it's always interesting to go somewhere new, but I also now see the benefits of sticking around in one place.

Pete: So, with all those moves, it was in high school that probably unbeknownst to you at the time that your leadership qualities sort of started coming through. The sort of those little idiosyncrasies of your mum was starting to shine through. Tell us a about how you became the queen of the outcasts.

Renay: Mmm. Look, I think I was forced to, um, I had no other. I think by the time I got to the school where I did the most time and coincidentally where I met my partner, we met in high school and were high school sweethearts. So, um yeah, so there was one benefit of changing all those schools, but, um, I think it kind of forced me, too, because I was not prepared to have people tell me that I needed to conform to a certain or even trying to attempt to conform. I wasn't, um how would you put it? Yeah, I just never have felt the inclination to be like everybody else. Um, which is kind of an oxymoron, because you can't be like everybody else because everybody else is their own individual person. So, I think it kind of forced me to do it, because when I got there, it was at a moment in my life where I had to draw a line and, you know, thinking back now I was 15 or 16, and it's an incredible thing for a young person to kind of recognise. But to draw that line and say, you know, for my own mental health, I'm not going to try and reach something that I'm always going to be Aboriginal. I'm always going to be tall. I'm always now I'm always going to be disabled. Nothing is going to change that. So, I must work on getting to a point where I'm happy with what I am with who I am. And so it was at that point that I just couldn't. I drew the line and said, you know, what if you're not going to accept me, then I say stuff your system and I'll have my own little party over here. Then anyone who wants to come is welcome to join.

Pete: And you've got a few followers.

Renay: Yes. I mean, I wouldn't call them followers. I just call them friends. But it certainly gave. I noticed it having an impact on other people. Um, an impact on them being able to say, You know what? Maybe maybe I don't have to worry so much about that. And, you know, I'm still in contact with people that I met in high school and from that little group of friends that I declared myself the queen of the outcasts. And, you know, I've had them tell me after 10 years that I made a difference in their life, which is a really, it's a really confronting thing to hear, because it means you must accept that positive things about yourself, which I know is quite difficult. I'm working on taking compliments and things like that, you know? But having these people say to me, you gave me a chance, or you gave me an example of what I could do, and I appreciate it. And yeah, I absolutely love that. I love that little teenage me was sticking it to the sticking it to the mean guys and yeah, yeah, absolutely.

Pete: Do you think you recognise at the time the leadership qualities that you have? I mean, you're the queen of the outcasts, but did you actually realise that you were part of this very little crew, if you know what I mean. You had these holidays?

Renay: No, no, absolutely no idea. And even, you know, looking back on it, I kind of almost, I mentioned it's very hard for me to take compliments and I see that as a great compliment. So, it's really, um it's difficult to accept. But I had no idea at all I was, you know, I like to think that my behaviour, I'm the only person that must live with it at the end of the day. So, if I'm not happy with that, then you know I'm the one that's going to be rolling over and thinking about it and doing all those things. So, I think it just came from that push of not wanting to accept. And I mean, I've been told that from the beginning, you don't have to accept anything. But what makes you happy? You don't have to accept any kind of behaviour from people that you don't think is treating you the way that you want to be treated. So, I kind of I think the message just stuck.

Pete: And who told you that? Is that Mum,

Renay: Mum? Aunties? Yeah, absolutely. I have a great memory of my dad's sister coming to visit me when I was probably gosh, not even three. And she's a very tall woman. And so, I remember her being this great giant of a woman who bundled me up and told me how wonderful I was and that I could do anything. You know, all those cliche things that people maybe don't say a lot because they sound so contrived. But I remember hearing it at that age and is thinking, Yeah, maybe I am. And if I don't if there's moments in time where I don't can't necessarily believe that knowing that other people believe that is also helpful.

Pete: Yeah, nice. Well, let's get forward. 25 years old studying fashion, mother to a young baby with a disability. But some things weren't feeling just right for you, were they? Tell us what some of your symptoms were and what sort of changed and what the eventual diagnosis was.

Renay: So, I mean, for a long time, I just thought it was me being tired and being overweight. I thought those things were what made it hard for me to, you know, a lot of the people that I was studying, fashion lives were almost 10 years younger than me. And, um, seemed to have all this energy and didn't have the responsibilities of caring for a child and caring for my mum at that time as well. And so for ages, I just thought that the tiredness and the sort of, um what I perceived as tiredness and exhaustion but was pain. I just ignored it for a long time. But I remember not being able to stand up in. I was in a pattern drafting class, and they make you stand at these ridiculously large tables and draw long lines, and it's for someone with a disability like mine. It's difficult. And I remember thinking, you know, there's got to be something more to this because I'm trying, my heart is and things are not happening You know, I'm still I was pregnant with my second child, and I couldn't even walk around the block. I would try. I think we were trying to go trick or treating one year. And you know, I couldn't even make it a couple of 100 metres around the block because I was in so much pain and it just felt like all my joints were on fire and that when my mom passed, it really made me think maybe I should listen because I had seen her put. I'd seen my mum put other things forward in front of her needs my entire life, missing out on meals and then not going to the doctor because it was too much hassle or she had, and I just I couldn't do it anymore. So, I asked every single doctor that I could that would see me. You know, there's something going on here and time after time I got just lose some weight and you'll be fine or, you know, try eating better or getting more sleep. Or and, you know, I was doing those things and it just didn't make a difference. Um, and so finally, I ended up seeing a doctor. I'm the kind of patient that likes a doctor that has a very welcoming bedside manner. I need someone who sort of really make me feel like it's okay to be there. But I ended up seeing a doctor that I wouldn't normally see at the same clinic that I had been going to. And, you know, I said, look, I'm back again because I need another test, or I need something to happen because this is just not sustainable for me anymore. And he said, Stand up. And he was a very soft-spoken man who didn't say very much at all. But he said, stand up. And he got me to do a couple of I think, a couple of stretches or trying to touch my toes or something and set me off for a blood test. And when I went back to the follow up, he said, oh, I think you've got Ankylosing Spondylitis and gave me this piece of paper with the blood test results and said, you know, go off and see a rheumatologist And of course, what's the first thing you do when you get a diagnosis as you do a Google, what it's about?

Pete: Can you explain? Because it's a bit of a mouth? I can't even say it.

Renay: Yes, Ooh, I think it's called something else Now there's new changes, but what I got diagnosed with is something called Ankylosing Spondylitis osed with fibromyalgia at that time, and I've had I've been diagnosed with depression and anxiety for a long time before that. But so, ankle losing spondylitis is a form of inflammatory. Arthritis that affects it can affect your spine and your hips, but it can also affect all the other limb sorry joints in your body. It leads to if it gets bad, um, and untreated, it can mean that your spine gets fused together so it's unable to move around. So, yeah, in between, I won't get too technical. But in between the discs in my back, there's little spurs growing, and they cause a lot of pain and cause a lack of mobility as well. Like I have trouble moving around. Or if I do, it's painful.

Pete: You're a wheelchair user now, yeah?

Renay: Yes, I should have been for a long time before, but it was a very it was a mental hurdle that I had to get over. But yeah, I've been a wheelchair user for, um since my second childhood. So about five years now, and right now I have I like to call it the world's best wheelchair because it's amazing. It can go on the beach. It can go on snow go. Yeah. So, I love getting out on country with the kids and, you know, going for it and climbing mountains with it. So that has been amazing. It's been a game changer. I don't know if you've ever used a wheelchair before,

Pete: Tristram, my co-host, is a motorised wheelchair user. He plays sport and everything in it.

Renay: Yeah, well, I've been looking into soccer and things, so I'd really like to chat to him about it, but yeah, I've been using it, and I also use one at home. But the biggest obstacle by far using a wheelchair is just lack of physical access to things you know, once I got over my my reservations, I suppose about using a wheelchair and what that meant for me because it's quite a pill to swallow, to have to admit that you're going to give up independence of being able to walk. But, you know, it changed my life for the better. I'd highly recommend anyone do it.

Pete: Great to hear what about now. That's obviously one side of it, one of these sorts of things that can help you along what you mentioned, obviously chronic pain and that sort of stuff we did. They try to heavily medicate you. What were some of the other things you did?

Renay: Um, look, my pain is the being managed. And that's because I use a lot of different things. So, I love water therapy. That's like being in the water is where I feel the best. Um, so you know, doing things like going to the pool or making sure I do my stretches with my exercise physio or massage is another one also that's great to reset my body and relieve that pain. Um, and so I do take medication. But I think without the other components of pain management it. Yeah, it wouldn't be as well managed as it is.

Pete: So, since your diagnosis, obviously you were in the fashion world, and you met a lot of interesting people there. Now you're coming into the disability community, and there's some amazing people in that community. Tell us who are some of the have you come across many sorts of leaders and people inspire you within the disability community?

Renay: Yeah, and they happen to be women as well. So, look, there's Marley Hermans. Do you know Marley? She works for women with disabilities Australia.

Pete: Yes, she was. She was in season one of Grow bold with disability, one of the first ever. She's amazing!

Pete: Yes, absolutely. And she is an incredible example of how you can combine fashion and disability, and it doesn't have to be one or the other. You know that that community can be both things and that people with disability can have, you know, being members and the parts of any community that they wish to. But yes, she endlessly teaches me how to back myself. And that is a skill that I'm very grateful for.

Renay: Maybe she's a new queen of the outcasts.

Pete: No, no, no. She can't take that title from you.

Renay: No, no, no. But you know, she is a woman that is constantly thinking of others and but also herself, always teaching me to back myself. And I think that's something that people with disability really could use. You know that they might need that extra push to advocate for something that they want or whatever it is. I think backing yourself is a great example to follow.

Pete: Yes. Well on that note, the always wrap up the podcast with the same question. And as you know, it's called Global with disability. We always like to ask people What does growing bold mean to you?

Renay: That's how I've been pondering this in anticipation. Um, I happen to think I'm a naturally bold person, So I think I've had to grow into understanding what that means for me and what I need to how I want to express that. I think so. Learning how I want to express what? What is important to me and the other thing about being a disabled person and in my case, someone who deals with fatigue and paying a lot to grow bold is also to put yourself first so you can say it's okay for me to rest or it's okay for me to make choices that are the best for me. And I think that's a really important thing to do, especially when, especially when the messages we get is that productivity is paramount and that what you do and that glorification of dizziness and you know to be bold enough to say, you know what? I'm just going to sit on the couch today and watch some TV and that's perfectly OK and I'm still awesome, you know, it doesn't mean I'm a lesser person because of that.

Pete: Fantastic. Now listeners can find out a little bit more about Renay. There's a new book out You may have heard us mention before it's called, We've Got this Stories by disabled parents and then published by Black Inc. Who helped us get in contact with Renay so you can find out all good bookstores. Rene, thanks so much for joining us today at Global Was Disability. Podcast Is Brought to You by Feros care, you're an amazing guest.

Renay: Thank you. I really enjoyed it.

Pete: This podcast is brought to you by Feros care delivering local area coordination services in Queensland, South Australia, and the Australian Capital Territory. Feros care is a people care organisation committed to helping people live. Boulder lives. We call it growing bold, and for over 30 years, Feros has been making it real for both older Australians and those living with disability. To find out more, head to Feros care dot com dot au

Pete This podcast is brought to you by Feros Care, an NDIS partner delivering local area coordination services in Queensland, South Australia and the Australian Capital Territory. Feros Care is a people care organization committed to helping people live bolder lives. We call it Growing Bold. For over 30 years, Feros has been making it real for both older Australians and those living with disability. To find out more head to www.feroscare.com.au 

The content and views discussed in this podcast series are those of the individuals involved. They are not necessarily condoned by, or, are the views of Feros Care or its employees.