Disability and Drag: Living with Prune Belly Syndrome with Linh Uendo
- Peta
- Feb 10
- 17 min read
In this episode of The I Can’t Stand Podcast, Peta Hooke is joined by Linh Uendo for a deeply personal conversation about disability, drag, and growing up in a medicalised body. Linh is a Melbourne-based drag performer who was born with Prune Belly Syndrome, a rare congenital condition that shaped much of her childhood and continues to affect her daily life.
The episode also explores how drag became a space where Linh did not need to hide her body, and how visibility as a disabled person can still invite judgement, even in spaces that see themselves as inclusive. This conversation will resonate with anyone interested in disability lived experience, identity, body image, and what it means to take up space in a world that often asks disabled people to stay quiet.
Listen to the Episode
Key Topics Discussed
• Living with Prune Belly Syndrome
• Growing up in a medicalised body
• Body image, shame, and privacy
• Learning to eat later in childhood
• Disability, drag, and visibility
• Finding confidence and disabled joy
Transcript:
00:00:02
Peta: Hello, and welcome to the I Can't Stand Podcast. It's a show that explores what it's really like to live with a disability. My name is Peter Hook, I have several palsy and I'm your host. Today's guest is Lynn Nuendo. Lynn was born with prune belly syndrome and spent much of his childhood in and out of the Royal Trun's Hospital in Melbourne. Lynnuendo is Dean's drag Postpona. He is a successful drag artist with the disability. In this episode, we talk honestly about what it means to grow up disabled, including body image, shame, privacy, and navigating things when your disability involves your bladder and bell. We talk about drag not as a spectacle, but as a space where Lynn found and confidence and visibility. So, without any further ado, let's get into it.
00:01:16
Linh Uendo: Hello everybody, my name is Dean, but I'm also known as my drag persona Linuendo, the cheese or queen on the Melbourne scene.
00:01:26
Peta: As you said, you're an amazing drag artist, have a disability. You have a disability called prune belly syndrome. For those of us who may not know what that is because I didn't before I search this episode. Can you please like introduce us to your disability?
00:01:45
Linh Uendo: Of course, I have a condition called prune belly syndrome. For those that don't know, it is a condition characterized by lack of or complete absence of abdominal muscles. No stomach muscles, so no abs for me. But it complicated a lot of other systems. My respiratory system, so difficulty breathing, my digestive system, my muscular scalito system, basically everything except for my heart and my liver. My heart and my liver are the only two things that are fine as far as I know.
00:02:27
Speaker 3: That is a lot to deal with, particularly when you're born with your condition. I mean, I'm born with cerebral palsy, so I can understand to an extent, but that must be quite full on to take on as a child, to realize that your health can often be in the balance. When did you first realize that you had a disability and that was the case for you.
00:02:50
Linh Uendo: Very very young. I think it was when I was going to kindergarten and realizing or my parents telling me, oh, you can't do this, or you can't play with the other kids. They had certain analogies, so you can't really go near them. The earliest memory of going to hospital it was a chest infection, and I would have to be having like constant suctions down the throat and nose to get all that secretion, now the mucus, all the gross stuff out, and it was painful and it was arduous and long and just terrifying. How old were you, Prau, I want to say six seven years old, But the chest infections were like the tip of the iceberg. Everything else, like having to live with the colostomy bag, having to urinate through a catheter, I still had to do that, all the appointment surgeries. I had scoliosis surgery when I was thirteen, Like all of it's there's so much more layers to this. The nurses and doctors really took care of me, some more than others. Other doctors were very confused at what to do, and other nurses were not really that kind. But majority of the time they were steadfast in taking care of me, not only taking care of my physical health, but distracting me enough because DS as kids, you don't understand what's going on. And my parents, as blessed their hearts, they tried their hardest to explain my condition as best they could, and even the doctors and other nurses tried to explain my condition, like all the details or what I was going through, but it still was very scary. It's still very confronting and still very confusing. So the doctors and nurses, mostly nurses, really took the time to give me a lot of comfort, give me a lot of attention, and just sit with me when my parents couldn't be there. They were there.
00:05:11
Speaker 3: How was it being the discipled one in the family.
00:05:15
Linh Uendo: I always say this to like as a conversation kind of point, and even talking with my sister, the older sibling is meant to take care of the younger ones. It's rare that you get younger siblings having to take care of the older ones. And it feels not emasculating because it has nothing to do with gender, but it it's more this sense of helplessness, like I want to help my younger siblings or take care of them, or be that big older brother that people that they turn to when things are not going okay, But instead I had to turn to them.
00:05:59
Speaker 3: Yeah, goes against the order of how life should be or how old life should.
00:06:04
Linh Uendo: Be right, Yeah, I mean I learned from day dot that I wasn't normal. I was. It was not like even going to school in kindergarten. I knew. I just knew I wasn't normal. And my parents also pointed that out. They would They did not hesitate to distinguish the difference.
00:06:26
Speaker 3: Right, Okay, And do you think they were doing that as a form of protection for you to fully be aware of your circumstance.
00:06:36
Linh Uendo: Definitely, they definitely did that. It was not to hurt me. It was not to judge me at all. It was to protect me. It was to prepare me for future things if I was going to leave that long being faced with their first child having a disability that is a very rare one in forty five thousand, and the percentage of babies not like the percentage of babies living not past the age of two. Yeah, that's high. Like, and for me to pass that age and I am now nearly thirty, it's it must be very daunting for it. It must have been very daunting for my parents to make split decisions like that when my life was on the line, you know.
00:07:31
Speaker 3: And it must change your viewpoint of life as well, like did you ever did you find it difficult to think about the future when you're a kid? Did you live in the moment? Like, talk to me.
00:07:42
Linh Uendo: About I love living moment to moment. I was always like, God, I've had conversations with friends at school. They're like, Oh, I want to be this where and I grew up or in ten years time, I hope to do this. And even now in my adult life, it's like people are saying, what's your ten year plan? I have no idea. I've never had to think about that because it's growing up. It was always am I going to get better? Am I going to see you tomorrow? Am I going to last the night? What's gonna happen in the next hour. So whenever I am faced with big things like do I want kids? Do I want to get married? Do I want to, you know, have a full time job, the answer to all of them is no, and be I don't know. Life is so unpredictable that my life is so unpredictable at this point that I honestly don't know where it's going to go.
00:08:46
Peta: I'm given you had such a unique child. I mean, for many of us, it doesn't sound unique. Many of us listening to this episode and be like, oh, yeah, sounds like just like me. But let's be honest, those of us who listening often feel like the odd ones do not have a similar experience to those of us At school. Many of us struggle to make friends at school. What was it like growing up? I understand it was quite difficult, Like you didn't go to camps or sleepovers. How did your disability shape your friendships and sense of belonging?
00:09:24
Linh Uendo: Well? Well, first off the bat, when I went to school, my parents told me to never tell anybody about my disability at all because at that point I had a gastostomy tube. That is because I was born blue and I had had to have a trackie for the first two years of my life being on ventilator, So when that was removed, had I started. They tried to get me to eat food, was not having a bar of it, so they put me on a gastrostomy tube and was nutrition fed until I was ten. But during school, because I had the PEG and the colostomy bag and doing the catheters, I could not tell anybody the kids. The kids already bullied me for my personality. I think it would be it would have been relentless if they knew how more delicate that I was or fragile I was, Like even the even my mom had to talk sit down and talk with the teachers, saying, Dean's not meant to do this, He's not meant to do sports. The kids are not to go up and touch him or push him around or anything. And I was always labeled the sick kid that gets old really quickly.
00:10:46
Speaker 3: I'm sure that sounds awful. I'm sorry you experienced that.
00:10:51
Linh Uendo: Yeah, I mean I missed out on a lot in school, Like attendance was terrible because you know, having constant chest infections and new ti is and being in hospital because of that is terrible. Like I wouldn't wish it on anybody. But also this you mentioned school camps and I'm like, I've thought about it and went my year five school camp. Yeah. The one time I go to camp and I get food poisoning, like just it. Life was like, you know, you're trying to live, We're not going to do that.
00:11:26
Peta: No, No, that really must have impacted how you saw your disability or am I reaching here, Like I feel like there's a lot of shame built in around your disability.
00:11:40
Linh Uendo: There was, and there's still a little bit. Is I am seeing a therapist for it?
00:11:51
Speaker 3: Good?
00:11:52
Linh Uendo: Yeah, there was a lot of shame. And you can draw parallels because I am a gay man as well, so there's a lot of parallels between the queer experience and being disabled as well, especially when parents are telling you, oh, don't tell anybody. And I made like a few hospital friends that I still talk to this day, but not a lot they but my family is also quite upbeat in personality and nature, so they are optimists. They love to make people laugh. But you can only be an optimist for so long before reality kind of hits you on the head and go, hello, you have to deal with this now. I like to think of myself as an optimistic nihilist. Life doesn't matter, okay, but just enjoy the time that you have because like, even though it doesn't matter, you still got who knows how long to live, so why not live it.
00:13:03
Speaker 3: One hundred percent? Which I'm sure goes into why I went into drag in the first place.
00:13:09
Linh Uendo: Oh, definitely, definitely. I loved singing. I love performing so like even as a kid, I remember my first memories of singing, like somewhere over the Rainbow and my mum going, okay, you can actually sing. Throughout my hospital experience, I was told I can't do things. I was not able to do this, I was not able to do that, and even coming to that acceptance of well, can't exactly get out of bed, so I had to think of things a different way and singing. I was so thankful to find that, and so I developed this kind of flare before performing, even coming up with dreaming of dreams of like or goals to you know, be on Broadway do musical theater. At the time, my mum dashed my dream so hard. She was like, being your bedridden, you cannot There is no way, absolutely not. Sometimes I do think about that now. The reason I got into drag is because I love performing. But I didn't have the background a lot of other kids would have if they were to do musical theater, like kids doing musical theater and adults either I should say adults doing musical theater. They've had training for years as kids or even teens, developing their skills, whether it be vocally, dance wise, or acting. I had none of that. I just had a lot of fire, a lot of passion and zest for life, I guess so when Drag happened. When I found Drag, it was this. You know how when you try to unlock a door with so many keys on a key ring and you can't find the right key, and then when you find that one key, the last one turning the lock and you hear it release and the door opens. That's what it was like finding Drag. I was determined to succeed, and nearly eight years later, Linnuendo is still going strong.
00:15:37
Speaker 3: She sure is, with Chazel outfits and everything. Yeah. And I also know you do puppeteering as part of your drag act. Talk to me about that.
00:15:47
Linh Uendo: That is also quite unique. So a lot of the drag queens in Melbourne, they are amazing. They can flip, they can do high kicks, they can dance like no one else. Starting Drag, I had my first question was, Okay, what can I do? What can't I do? What the other drag queen's doing on stage flipping and bucking and turning around on stage. Cannot do that to save my life, I will break a limb. So I remember wanting to do Beauty in the Beast by Celine Dion and Peebo Bryson the end credit song to Beauty and the Beast, and I was like, it's a duet, damn it. I can't do a doet just with by myself. At that time, I didn't know many drag kings who would take on the Peebo Bryson roll. So I quickly thought, oh wait, I'll make a sock puppet, a sock puppet that looks like a dog, and he could be the Beast because well, animal dull it rights itself. And the level of warmth that I feel the minute I pull out that dog puppet and everyone laughs, I was like, oh, I found it.
00:17:10
Speaker 3: Obviously. Because you had such a difficult childhood, to have the audience on your side must be so empowering.
00:17:19
Linh Uendo: It's very empowering and very different. Like for years, people, random people, family friends have been underestimating my abilities because they what they see is a person who's in pain or you know, is late to things all the time or struggles with day to day things. But in that moment, they didn't see that. They did not see that at all. Not only that, but also I don't see myself that way anymore. When I'm in drag, I have a lot of doubt out of drag, a lot of self doubt. It plagues me a little bit. But when I'm in drag, oh my god, you could not tell me anything.
00:18:07
Speaker 3: In my research, I was quite surprised when people in the scene were telling you that you might face stigma because of your disability. It's from like the outsider's perspective, and I'm a very strong ally of you know, the LGBTQUI community. To have that, that surprised me that people wouldn't accept you as you are.
00:18:31
Linh Uendo: Again, it's a protective thing, but at the same time, there's a whole intersectionality of here at play. So like I am gay, disabled and mixed race. That is a recipe for defiance. You're automatically defying what other people said that they want you to do.
00:18:57
Speaker 4: It didn't surprise me that people poll said that because I've been infanticized my whole life and be I could see their perspective because as someone who is gay and in the community and seeing the vitriol online of like in the political sphere as well, how queer people are being demonized or.
00:19:26
Linh Uendo: Were persecuted. What song am I going to do? What am I going to How am I going to do this safely, but also in a way that's not going to put me out but also shock everyone too much. I love I love thinking things through before doing them because I've always had to do that.
00:19:55
Peta: It's a form of self protection.
00:19:57
Linh Uendo: Self preservation. Yes, and a lot of people like, just throw caution to the wind and all that. I'm like, yeah, if I threw caution to the wind, I'd be blown back.
00:20:06
Speaker 3: No, I'm proud of you for just being like, yep, this is my disability, considering of all the barriers that you've faced, people being like, don't talk about it, it's something to be private, and yeah, of course if that's how you feel, But how did you get to the point of being like, no, I'm actually going to talk about it online and publicly.
00:20:29
Linh Uendo: I knew I always wanted to be open about my disability even before starting DRAG, And again, my parents were like, no, you've got to trust the right person because they don't know what they're going to do to you, blah blah blah. I was very thankful enough to have enough intuition to know when I could trust somebody. When it came to DRAG, however, I knew it was going to be an uphill battle. So when it came to me introducing my disability to my DRAG, I spoke with many like a lot of performers, a lot of other people and even close friends, and a lot of them are like, you have to It's not about them being ready to listen. It's about you being ready to answer the hard questions because they're going to come to you because a this condition that you have is rare, be that not many people know about it, so they're going to ask questions. They're going to want to know more. So you have to kind of come to an acceptance of you have to be open about this stuff, even if you don't necessarily feel like you're ready. It was during twenty twenty and I was like, I am ready to talk about this now because I've built a name for myself in the community at that point. I didn't want there to be this anonymity with linuendo. I didn't want it to be mysterious and so closed off. So why not chuck in my own personal story? And I love that drag and musical theater can be a vehicle for telling my story as well as hearing other people's stories of living with a disability and doing Drag.
00:22:21
Peta: One occasion where you really did live up to disabled joy was that you performed at the Royal Children's Hospital Good Friday Appeal in Drag, Yeah, which you described as so healing. What was that moment like for you? Oh?
00:22:35
Linh Uendo: God, that was like I said, it was really healing. I'm very thankful to have many connections, quite a few connections. I'm a bit of a social butterfly connecting with James, our mutual friend James, and I just remember telling him that my dream gig is to do the Royal Children's Hospital Good Friday Appeal because the Royal Children's Hospital, for better or worse, they save my life. They help me live and I owe a lot of my gratitude to them. Roll Children's Hospital Good Friday Appeal very special kids, Ronald McDonald house, I owe a lot to them. So doing that, like being able to be the person that was there for me growing up, the meaning is insurmountable. I cannot it's indescribable. I can't express how amazing it felt to roam around as Glinda the Goodwitch and talk to these kids and bring a smile to their faces. It just it felt the right move. But I did have my reservations about it because I had never heard of a drag queen being in such a public setting as the Raw Children's Hospital and talking to kids. Because the political climate now being so harsh against queer people and harsh against drag queens, there was a little bit of fear there, but I think because the Raw Children's was more than happy to have me, and I had a few friends to help me, like be by my side as well while roaming, I felt very safe. Thankfully that day. I had no parents like you know, clock me at like as a being a boy in a dress or any of the kids say untoward either. This is so amazing. I want to be in the moment, but at the same time, in the back of my mind, I'm going if someone asks me if I'm a boy or girl, it's all over.
00:25:00
Speaker 3: I can't get out of my mind to start. Contrast between the beauty that you encompass as Lynn Nuendo and you know the how much pressure there is to look a certain way as a drag queen, but also know that you must have felt some body image definitely stuff when you're at school when your disability does involve your physical appearance in the way it does.
00:25:29
Linh Uendo: I was not happy with how I looked as a kid physically, and still today there are some discrepancies, and I'm like, I kind of don't like the way I look. But like my therapist told me, it's about shifting focus. I was so focused on how thin I was. I was so focused on the fact that I had a pop belly at the age of four because of the prine belly syndrome. I have a lot of physical scar like neck back, on my side, my stomach, and they're all from surgeries or needle pricks like things like that. It can be daunting, especially when I was single, going on now as an adult, going on the dating apps and having to disclose that you are, that you have a disability to someone you don't know, just to see if they are fine with it and then go on the date. It's always very daunting, always very scary. But I always think, and always thought when I was single and doing that, what if I don't disclose that information off the right off the bat, They're going to find out later and they're going to feel like they've been deceived, or they're going to feel like they've been lied to. And I don't want that. I'm currently in a relationship now with this guy named Sam. We've been together for nearly four years, and it's amazing he understood right off the bat of what I've had to deal with, not because he knew the condition, but mostly because he's also had to face some hardships as well. Won't disclose any further, but we got each other there. Oh, it really threw me through a loop when people would say, mostly men, would say, oh, I hate my stomach. Mind you, their stomach is scarless, they've got it looks like there's nothing wrong wrong quote unquote wrong with them, and so it really threw me and frustrated me whenever they would say that and they say they hate their stomach, and I'm just like, mate, you want to talk about hating stomachs? Wow? It was me being frustrated at other people not appreciating what they have. And I'm pretty certain you've experienced that as well. Even now, I do have body image issues and it does bleed through in my drag as well. I modeled my drag after old Hollywood actresses of the nineteen thirties to fifties, the Golden Age of Hollywood, because those women Rita Hayworth, Marilyn Monroe, Greta Garbo, Joan Crawford. All of those stars of stage and screen had faced all those women had faced so much hardship in their personal life, and yet and yet on screen they were dressed to the nines, a head held high and walk. That's the confidence that I want Lynda Wendo to have. But mixed with that, I want there to be a lot of disabled joy or just joy in general.
00:29:29
Peta: Is there something that you wish people better understood about what it's like to live with prune belly syndrome?
00:29:36
Linh Uendo: But disability comes in many forms and different severities, and you have to It's not a I want you to be this, it's you have to be patient with us because we've been because we've been patients for so long.
00:29:58
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