"Becoming Disabled Made Me Love My Body" Renay Barker-Mulholland
This chat is a cracker. Renay is a beautiful ball of happy, sexy energy. She will be forever known to me as The Oprah Of Underwear.
I hope you enjoy listening.
Connect with Renay:
The Disability Justice Network: https://www.gofundme.com/f/disability-justice-network-mutual-aid-fund
Connect with Peta:
Peta [00:00:03] Hello and welcome to the The I Can't Stand Podcast, the podcast answering your questions on what life is like when you have a disability. This week I'm chatting to the amazing Rene. We speak all things fashion, disability and being a First Nations person. If you'd like to ask a question for a future episode of the podcast, you can get in contact with me either via my Instagram. My handle is at Peter Hook, spelt peta hooke or via email. My email address is firstname.lastname@example.org or via my website icantstandpodcast.com. Without any further ado, let's hand it over to Renay.
Renay [00:01:05] Yeah. My everybody. My name's Rene. Home. I am a black of all trades. That's what I've been referring to lately. I do everything off fashion, writing, activism. Well, lots of different things. So I think black of all trades is a good way to cover.
Peta [00:01:30] You also have a disability. I was going to have a go at pronouncing it. With my dyslexia, that probably isn't advised. So could you tell us what it is and tell us how that represents in you?
Renay [00:01:44] I have what's called ankylosing spondylitis and also something called psoriatic arthritis under the banner. But basically it's an autoimmune disease. Just makes life pretty painful. It also means that my my abilities were measured, walking as hard for a long period of time. Basically doing everything is hard. I think it's really important to mention that I have psychosocial illnesses as well. So I have PTSD, major depressive disorder and anxiety disorder. So those are the things that, you know, people see me because I use a wheelchair most of the time and it's a pretty it's a wheelchair that you can't miss because it's so very large. And I'm often dressed very fantastically, some of it hard to miss. And so people say that physical, but I always think it's important to mention that psychological as well. The things that impact me just as much as not being able to walk.
Peta [00:02:52] You're so right. Like, just because you have a physical, an obvious disability, there's often more challenges as well. Like, yes, I sit in a wheelchair every day, but there's lots of hidden disabilities that I don't necessarily talk about. Like I have arthritis as well. I'm in pain a lot. And often they're the more difficult of the two. Yes. Stuff, the physical stuff. At least people have an understanding of what that is and how for me, at least how it impacts my life. Whereas describing pain is so difficult for people who haven't experienced pain.
Renay [00:03:33] Yes. And chronic pain as well.
Peta [00:03:36] So have you always have a disability or is this something that's developed as you've gone through life?
Renay [00:03:43] Look, I've started off life in a pretty rough way. My mom was a single mom and she had to I have two older brothers, and then she had me. She was a single mom to indigenous kids who did her best to rise up. And I did experience a lot of trauma in my early life. I didn't see that as a disability until I was older. I spent a long time trying to get a diagnosis for my arthritis. I suffered a lot of fatphobia, so a lot of medical people saying know if you just lose the weight that point based on. So I'm trying to go for a walk to lose some weight and would be events of three days afterwards because my body just needed to recover from that. When I got that diagnosis, everything clicked in and it was like, I'm not just this lazy, fat woman who needs to go and lose some weight to feel better. There's a legitimate reason why I'm not feeling good. I was published in a book recently called We've Got These Stories of Disabled Parents. And one important part of my story, and that is that I realise it's not a moral failing for me to have all these things. It's not because I'm a bad person. It's because that validation of that happening and finally having someone say, Yes, I believe you. It does. It does take so much energy to educate someone who feels pity for you. But you should pity me because I'm stuck in a conversation with someone I don't want to be with more than anything.
Peta [00:05:41] As a disabled person, I can appreciate that you're constantly educating. Can you explain why advocacy is so important to you, or is it something that you feel that you need to do? Or is it something that's put on your plate by default?
Renay [00:05:58] Court. I'm a bit of a bit of B. I feel like I need to do it because that's the kind of person that I want to be. I want to live in a world where it's equitable and fair and, you know, people have access to basic things that they need health care, you know, public transport, all those things. I want that for everybody. So I feel like as part of that, I have to advocate and and, you know, create change in that way, but also as an indigenous person. It's a cultural responsibility. And I had a really interesting conversation with a friend the other day who is not indigenous. We just we were talking about the larger community and I said I was really worried about one of my extended family members, about one of the kids. And we were just talking as friends, so we were just talking about it. And I said, Yeah. And I feel like I've got just as much responsibility to help this child as the parents do. And she mentioned that she thought sounded really exhausting to have to worry about so many things. But when you worry that so many people worry about, you know, worry about so many people care for you. So you share that responsibility. It is like I said, it's my fault because that's what I was born into. But I also really believe in it as a principle that will help more people just in general. So I kind of feel like I have to because that's how I want to be able to sleep at night. But also I want to be able to be a good member of my community. That's that's an important thing to me, to some.
Peta [00:07:55] Many people I speak to on this podcast, a lot of us have connexions with fashion because fashion really gives the outside world an indication of who we want to present ourselves to be. So why is fashion important to you and why did you get into it?
Renay [00:08:12] Oh, I love it. I love it so much. I could talk about it all day, every day. I think I did. I was told that when I was a child, I was always quirky. I think how my mom put it in the way that I dress. And I have really, really, really wonderful memories of my mom, which is the neighbourhood centre and I would get donations of clothes and I would have to help her. Well I wouldn't have to go no. For these things on the table and I would so often going, can I have this one please play. It's like we have this water. And she'd go, I know, you know, you've got clothes at home. You don't need this one. And then as I started getting older, it became a way for me to protect myself or shield myself against the world. My family that I grew up with know very in the best way they could be a very important body part positive. My dad was a very, very beautiful man. My mom was a very beautiful woman. And I think in their experiences. Confidence was a. Ana. So I wanted to ask that. I'm happy to call myself that now. But when I was. Because I don't think it's a negative thing. But when I was 15 or 16, I was continually being called fat, despite the fact that I wasn't. And I lived in a small little town. Internet shopping was not big. Then in 1996. And so I kept trying to express myself professionally. I couldn't find the things that I wanted to wear, and I couldn't find them. And so, you know, you take high risk and all this in high school, I went through my pair of shorts or whatever it was, and then I was hooked. And it was just so wonderful to feel like not only that, I represented myself, I. An individual because I wasn't wearing things that other people were wearing, but that they fit me, you know, I just didn't like the pants for long enough for people or that, you know, they look the way that I want them to. You don't need to speak the same language to be able to see an outfit and go, Oh.
Peta [00:10:45] Joe totally speaking my language. I'd love to buy whatever you like that.
Renay [00:10:50] Well, you know, I've got in the works. I'm starting off small, but in the works and underway collection. Oh, yes. Because there's not enough choices.
Peta [00:11:03] And I tell you what, if you can make some sexy, dirty words. Right.
Renay [00:11:08] Make it. Yes. Yes. I'm with you. My my partner is one of my parents. And not to get too risque. But if I want to surprise him and maybe wear something that makes me feel good most of the time, I have to ask him to help me put it on. Well, you know, I. I want to be able to surprise him and say, you know, be spontaneous.
Peta [00:11:36] I mean, obviously, you have many areas to you and I, but as a white disabled woman, I really want to better understand what it's like to be a First Nations person and have a disability. Can you explain? Help me understand.
Renay [00:11:52] Sure. I have two brothers and they're very tall and they're very dark, very intense. But when you walk through an airport with them and you see people look at them and you know that look, I'm sure you've seen that before. And it's just it doesn't matter what the judgement is, but it's a judgement. And so I think we have that common ground where you know what it's like to be average and you know what it's like to be. The only person that's visibly. Different to the others in a majority. And so I think that's where. Common ground now. Because if you look at the system that we are subject to in our community, in that society, they're designed to be negative towards both disabled and people of colour. When fostered, marginalised, underrepresented. You know, there's all these commonalities, but also in in terms of culture today we have a culture and. As long as you're respectfully, always welcome to join in. You know what I mean? And then that's that's interesting that word respect that when I when it's used, it's often seen as a chore. Or like I'll say, you know, my friends, that must be so much into it. But it's it's also. Common decency. Yes. Yes. Well, not so common, basically. But it's also, you know, that knowing that understanding that I can rely on or, you know, I can rely on you and that. That's what I mean by respect. And when we say you can rely on me, that means that. Well. If you have nothing to eat, I will feed you. If you have nowhere to sleep, I will help you get houses. You know, if you need help with your children, I'll help the children. That's what I mean by respect. I think the most important thing that I would. Like to say that if you really want to be an ally and just as anyone is not only share our tragedy, but also share our joys and our wings. What I would say that there is so much commonality. Obviously it is more of a difference, but there's more commonality.
Peta [00:14:37] On that same vein, can you tell me about the Disability Justice Network? How did that start and how did you get involved? Did you create it?
Renay [00:14:46] Um. Oh gosh, I wish I could take credit for creating it. I just came in early on. The Disability Justice Network is a grassroots organisation based around the principles of disability justice. So the DOJ was created to try. Stopped so many people falling through the cracks. So if you have money to donate, then you can know that we're going to facilitate getting it to a more ultimately marginalised person who has made a request to us.
Peta [00:15:26] Sounds like amazing work. Congratulations.
Renay [00:15:29] You know, I'm so proud that over the last I think it's over the last 18 months, we've distributed close to $60,000 of money that we've fundraised. And like for some people, that may not sound like much, but we are a group of disabled. People of colour, marginalised people with no government assistance with no you know, there's no charity model here. So for us to be able to price that and then distribute it, it just it makes you. I feel like I've already.
Peta [00:16:07] I was going to say, you're you know, certainly if you're not Oprah, you're certainly coming to become Oprah because I can do things like you get sexy underwear. Yes.
Renay [00:16:19] Well, that's I mean, that's I honestly do think everyone should have sex and the way. Like. I know, I know. It's again, it's a cliche, but I literally think it is true. I think everybody has beauty and everybody has sexiness and everybody has. I mean, obviously, appropriately, I guess. But I do think everybody is beautiful. I love seeing different ladies. I love Sade represented their.
Peta [00:16:50] So let's continue that love. And let me ask you what you love about having a disability.
Renay [00:16:57] The people that I've met outside the state. It actually. Helped me love my body more. Because without it, I think I would have been stuck. And because I my body was changing and I was losing freedom and I was losing my ability, I still had to love it because in my mind, I had got that mental journey. Which I'm not saying, you know, everything can be solved by thinking happy thoughts, but in my journey it was that becoming disabled that actually made me love my body, which might be 100% opposite to what everybody expects. But that's exactly what it did. I'm really happy for you. That's beautiful. I want it for everyone. And you got to be able to. Yes. Awesome, awesome. Yeah.
Peta [00:17:59] I just wish everybody could see what I saw in the mirror.
Renay [00:18:02] That's all I have to say. Yes. Oh, my God. I feel like Beyoncé every day on the way.
Peta [00:18:09] And is there anything you don't like about having a disability?
Renay [00:18:14] I would prefer not to have eyes where are concerned and I'm you know I've had as much medication is safe and I'm still crying and suffering in pain. I'd prefer that not happen. And also, money costs so much money. I love my wheelchair. It's amazing. And it's giving me given me freedom that I can't even imagine. But now I'm reading one inside the house and I have another $35,000 to pay for it. So.
Peta [00:18:48] And last question, what do you hope for in the future for people with disabilities?
Renay [00:18:54] Universal basic income. Mm hmm. Accessibility. Proper access to health care. And rule things in place to stop people being sexually assaulted and zoos. And things like sheltered workshops, just. That's. Hmm. On the philosophical side. I want them all to fucking at once. We don't need to have, you know, 100 metres of chew and glitter and you feel fabulous in whatever you are. I want I genuinely want that. It's yeah, I probably sound like a bit of a wank, but I do. I genuinely want em. Even if I don't like you, I'm still kind of rooting for you to get these basic things.
Peta [00:19:45] Well, it's been an absolute pleasure talking to you. You've totally made my afternoon. Thank you so much for your time. I really appreciate it, Renee.
Renay [00:19:54] I'm I'm kind of like I don't even know. I think I'm speechless, like, oh, we do this hanging out later. It might be also another step towards being fucking fabulous.
Peta [00:20:09] As always, thank you for listening to this week's episode. I hope you enjoyed it. If you did, can I encourage you to leave a writing review? If you listen on Apple Podcasts or hit follow on whatever podcasting platform you're listening on or share the podcast on social media. It all helps more people find the podcast. So until next week. Have a good one, guys. Bye.