Peta sits down with Paralympian Karni Liddell to discuss the growing NDIS crisis, the realities of disabled motherhood, and whether Australia’s Paralympic team is facing an unprecedented decline.
Connect with Karni Liddell:
Karni's podcast:https://open.spotify.com/episode/
Karni's Tedx Talk: https://youtu.be/GFTeBdp__Rg?feature=shared
Connect with Peta:
Instagram: @petahooke
Website: www.icantstandpodcast.com
Email: icantstandpodcast@gmail.com
Episode transcript:
Peta [00:00:03] Hello and welcome to The I Can't Stand Podcast, the podcast answering your questions on what life is like when you have a disability. My name is Peta. I have cerebral palsy and I'm your host. This week I have Karni Liddell. Connie is a Paralympian. She competed in the Atlanta and Sydney Games, and I was keen to hear her perspective on how the Paralympians are going over in Paris. She was also incredibly honest in sharing what her life is like as a single mother with a disability, and the challenges she didn't quite expect. Also, she shares some valuable insights on how the NDIS could be improved. We have those big cuts on the horizon here in Australia and I know many of us are anxious about it. So without any further ado, let's get into it.
Karni [00:01:15] My name is Karni Lydell. I wish you could see my wheelchair. It's under the. We've ot to figure out a system whereby we can see our wheelchairs in these Zooms or whatever this program is.
Peta [00:01:26] I'll lean across. You might be able to see mine in the mirror.
Karni [00:01:28] I like that idea. The mirror at the back. Woo! Bringing sexy back. Literally. I'm a mum. I'm a social worker. I used to be a Paralympian. I'm not supposed to say. I used to be that. They always say once a Paralympian, always a Paralympian. I have a muscle wasting disease and I use a wheelchair for longer distances. And I always say for good parking, which is usually funny for able body, people to hear that for us. We, you know, you probably use that joke way too many times.
Peta [00:02:01] We've all heard it before. It's like the old man that says, oh, have you got a license for that thing? It's like, yeah.
Karni [00:02:07] Or I drink driving the high five for being out buying a drink. But yes, I do know that most people mean well. However, people don't realise that sometimes we hear certain things like that. The high fives being out or you know, I stuck in that forever. I hope you're not stuck in that forever. Or what happened to you. What's wrong with you? Ten times a day. So if you're the 10th person on that day, you may get a different reaction from, say, the first time. If I'm with my seven year old child and you come up to me and put me in that situation in front of my child, that is actually really traumatising. I feel like I'm disabled again for the first time. Like it's like I became disabled again when I had him. If that makes sense. Because before it was just about me and I could handle it. But I've found that I've become less tolerant and more protective now that I've got a child sitting and hearing the world around him speak to his mother a certain way. And I wouldn't say that I've got the answers for that yet, because it really is hitting me harder than it did. Hit me. Pre pre Kai my son. When I fell pregnant. My sisters who use wheelchairs, who had had babies before me. They all said the same thing to me. They all said no, we're so worried, like, you know, not worried, worried, but oh God, you're going to get so many weird, personal offensive questions now. And I really didn't believe them. I felt like I'd been asked everything because I was so heavily involved with the NDIS. I felt like I'd really been interrogated. It's what I call it, and told all the things that I should do to, you know, to cure myself. And I had people pray literally pray on me, not prey. Which also is praying on me. But yeah, when I was pregnant, I was asked by. Random strangers, public friends and acquaintances. Business people. Questions like how did I fall pregnant? I dare anyone out there to walk up to an able bodied pregnant woman and ask her that question and see what happens. How am I going to be a mum? Not say directly. Some people did say that straight out like that, but it was more like, how am I going to bathe my kid? How am I going to, you know, put my baby in the car? How am I going to catch my son when he runs away from me in the playground? And and the worst question I think that I was asked and this is a, this is a question that we, I often talk about actually, I talked about in my TEDx speech is that instead of asking me that, I guess typical, universally acceptable, I don't think it's acceptable, but it seems to be quite acceptable to ask people if you want to have a boy or a girl. Hopefully that's changing with gender, but most people will answer that question. As you know is I don't care as long as my baby is healthy. And obviously that actually means you don't want me. You don't want Peta. And that's what it actually means. And that's why there's so much devastation around that diagnosis for mums. But for me that were asking me, is my baby going to have my disease straight up? You know exactly what's going to happen. If I say yes. And I didn't actually know. At the time because I hadn't, and I still am not 100% genetically diagnosed. Which is very common for people with muscle wasting diseases and really rare diseases like mine. At the moment, I'm diagnosed with Congenital Titinopathy. I think there's 35 of us so far in the world. And yeah, that was a really tough question because I didn't know whether he was going to have my disease. And to have that question thrown at me by acquaintances, friends and the public was very traumatising.
Peta [00:06:24] So if you look back now, how do you suggest that people do interact with disabled women who are pregnant? Because we do exist, you know, and I think that's a thing. It's because people, you know, only have to go down the street as a non-pregnant woman. And people were shocked to see me. So I can't imagine what it would be like if I had a belly.
Karni [00:06:50] Because you're so damn hot mate. Because you're so hot.
Peta [00:06:54] How do we educate people to be better so people, women in the future don't have to go through what you went through.
Karni [00:07:02] I always think to myself, would you ask that to an able bodied person? If not, don't ask me. I always try and interrogate and dissect questions and flip it on its head and say, how did I fall pregnant means that you really think again that we can't do anything. How did you fall pregnant? Let me tell you this. If you're not ready for me to say a couple of gin and tonics and a root, then I'd ask, because that's what happened. But also like the how am I going to be a mum thing again? I'm much almost like, you know, I worked in child safety and I'm a social worker, so I've, I've met a lot of mothers and fathers, in the child safety world who are toxic, abusive and neglectful that I've had to obviously interact with in my time as a child. As a child safety, you know, mandatory reporter, social worker. And gosh, I wish it was that simple. I wish it was so simple that only women who use wheelchairs are toxic and abusive, and neglectful that isn't the case. What has mothering or loving a human being got to do with my glutes, my hamstrings, my squats, my triceps, and those muscles? Because I got a muscle disease, right? So it doesn't even make sense that people would think. And it's so unbelievably. Disrespectful and a little bit arrogant because, hey, what do you think you can do that better than me? The fact that I have a muscle disease, the only way that impacts me being a mother is the fact that I may not be able to get a job like my able bodied female counterparts, hence why I have 5 or 6 different roles next to my name. And so do you. Because most of us people with disabilities cannot get good, reliable, purposeful, big leadership type roles in Australia. And Australia is one of the worst countries in the Western world when it comes to employment of people with a disability. We ranked 21st at a 29, OECD nations, and that is the only reason why I would have problems mothering is if I couldn't get a job because of my disability.
Peta [00:09:28] It is so close minded of people to only think of the physical attributes of mothering. And let's face it, that first year. Yes. You know, if I I'll speak for myself. If I choose to be a mother, I will need support, particularly in that first year. Absolutely. But as children grow, they need different types of support. It's not like it's an ongoing where you have to change your child's nappy for the rest of their life.
Karni [00:09:58] That's the easy part. Take it from me. You would be very surprised by when your child can't move. How much a wheelchair comes in handy. You'll be. You'll be fascinated. As I was once, I got the right equipment in terms of carrying Kai on my lap. It was easier for me because I didn't need a pram. And he loved it. He never, like all my friends kids, hated being in the pram. They cried. I fed Kai on my lap. I did everything with him on my lap. I breastfed in the bed. I didn't have a cot. He just latched on. He was fine and I never had an issue with Kai as a baby. The issue with having a disability and being a mother or a father in this country is the fact that we can't access playgrounds and can't access their schools, and can't access across the road. If we could do all that, I would need a support worker to help me with Kai, and I'm also a single mum, so. That also, makes things a little bit tricky for any single mum out there. And if I had a partner, it doesn't mean that he would be. Helpful anyway, because lots of able bodied, lots of my mates that nothing is fathers or mothers. Not everyone is amazing at parenting and not everyone helps the mother, you know, with the overnight feeds and often times they don't get help. Whereas I actually did because of the NDIS. I had support workers, not overnight, but I had support workers there. Especially when Kai got a little bit older and I couldn't access those playgrounds and things like that. I really needed support workers.
Peta [00:11:38] Yeah. I mean, it's sort of, counterintuitive, like I of course we need to keep our children safe by having high fences and pool fences around playgrounds and things like that. But for disabled people, it's like, oh, cool. I'm locked out too, with the kids.
Karni [00:11:57] And also you be like, in Southbank Brisbane, for example, there's a brand new playground that I don't know how many years it's been there. Just let's just say five. There is no way for me to get into that playground. So when my son goes in, I cannot get in any which way, which means that people with prams can't get in either. I don't understand why we're still building playgrounds and things for children that have steps. There are things called prams as well as children with disabilities, not just children who use wheelchairs and parents who have disabilities and the ageing population. We've got to. We've got to stop thinking that steps and ramps are problematic just for us. It's not everyone who gets a pram says some of this. I think, oh my God, we had no idea how bad it was until we got a pram. And it's like, yeah.
Peta [00:12:45] Welcome to our.
Karni [00:12:46] World. Welcome.
Peta [00:12:48] Yeah. And I want to talk to you about the NDIS because it's a very interesting time in Australia to be disabled. On the one hand, we've had the Royal Commission in the last couple of years and that has had some shocking all, but also at the same time not surprising results through some very brave people speaking out and really illustrating what it's like to be disabled in Australia. And also at the same time, we've got some massive cuts heading for the NDIS. How are you feeling about the NDIS at the moment?
Karni [00:13:25] No one in the world can afford care unless you are literally Elon Musk. Because care right now, according to the price guide, the NDIS price guide is very much dictated by service providers. Is $65 an hour minimum, up to about $120 an hour on a Sunday. And of course we only get so much funding per year. So you have to be so very careful how you spend your money, because once it runs out, it runs out. And it looks like we're overspending because we are we are overspending. If I want to go and exercise physiologist at, you know, let's say I don't I as a service provider gym like sporting wheelies s or spine life or whatever is out there. If I go to that disability gym, which I'd much rather go to because you feel like you're part of a majority and you feel strong and powerful and accepted and. They charge the price guide, which is excise Physiologies $190 an hour. It's if I go up the road to. I don't know if fitness first. If that still exists, I would pay what, 70 bucks for a, personal trainer? Every time I ask for a new wheelchair because I need it, either because I've progressively gotten a bit weaker. Or I can't access currently where I live. So where I live now, in the city, there's not. It's just too hard to get around without a big chair like yours. It cost the wheelchair that ends up costing ten grand extra. Because of all the reports that I've got to get from the OT. I'd like $1,800 a hit or whatever it is to prove that I need the wheelchair so you can see the cost. Blow-out. It's not about us hanging out and, you know, sipping pina coladas at the bloody Hyatt Hotel. This is a ridiculous situation that we're in. And this is not what we fought for. I fought for this to be once you're in with your disability you're in. You haven't got to prove that you disabled every five minutes, because we've got to do that everywhere else in the world. And then from there, hopefully we can get ourselves into an accessible living situation with the right equipment and obviously right supports, so we can then do life, get out the front door. And then the world was supposed to open up their doors to us to get employment, and that just hasn't happened. That's the disconnect. We've now learned, like we had to learn before the NDIS if we don't say these three goals, which is so condescending to ask a 45 year old educated mother, what are your goals? And my goals have to be things like being an independent, functional mother, you know, working. And the worst one of all is like participating in the community. What a joke. Who the hell what kind of a body person says I want to participate in the community? I mean, but that's what they want us to say. And if we don't say that, we know we can't get the care we need to live. I would be just literally looking at the price guide, the reports, the waste of money on reports, and also what why we are using certain mainstream services over disability services and a disability service providers have lost us as customers. Then they need to figure out a way to get us back. There is serious things here that I would love to get out there. That. Talking about us like we're talking about the sex worker thing, for example. That was absolutely disgusting to even talk about that openly. And I think it worked out to be 130 people all up have used sex workers and. I just want to get something out there really loud and clear here. Sex workers, prostitutes only fans. Whatever floats your boat. ablebodied, people utilise them all the time for a variety of different reasons, right? That's fine. And so so do disabled people. The NDIS. Registered sex workers we are talking about here are often utilised by people who have acquired an injury whereby they can no longer have sex the traditional way, they can no longer, you know, obviously get an erection or let's, let's be really frank, they cannot have sex like they used to have sex. Therefore, they may need to learn how to have sex so they can have a bloody great normal human existence.
Peta [00:18:08] Today is a very important day in disabled life because the the Paralympics started last night our time or very early this morning. How are you feeling about the Paralympics and how do you feel like the Aussies will go this year in 2024, in Paris.
Karni [00:18:27] So, Sydney 2000. We topped the medal tally in in Sydney, Australia did and it was truly life changing for me. I've watched the Paralympic team, our Australian Paralympic team. Really change over the years. And the reason there's many reasons why there's been such a big change with the Paralympics in this country. When I did disabled sport back when I was eight. When I started it was run by sporting wheelies. So, you know, I came down as this eight year old kid came down to Chandler Pool arrived there, and then all of a sudden, this whole new world opened up to me, where everybody was disabled. Everybody looked a bit like me. Everybody use wheelchairs. I walk with the really obvious, let me call it a gate. I call it a swagger. You know, I walk with the really obvious, you know, disability. And I was the only disabled kid at my school in Rocky, so that felt like I was the only disabled person in the world. And then all of a sudden, I wasn't when I wheeled into the pool that day. And now, if I was that eight year old kid, I would only have the option of going to the able bodied state swimming championships, for example, for swimming. And that's the problem is the only time I see people see us racing at that. You know, local level is multiclass, which means someone like me, like I'm obviously in a wheelchair, obviously, but I am in a wheelchair. So I'm a S6, which is a a low class S one being the most disabled, S ten being the least disabled. And I was in there because all four limbs are affected. If that happened to me, if I'd gone to state swimming championships and been surrounded by able bodied kids, just like at school, and then jumped into a multi-class event racing S10s. So an S10 Would be above knee one leg amputation, for example, or club feet or one hand missing so mildly disabled. So therefore they would beat me by about 20s or something. So I would have just felt like I was at school. I would have felt weak and not good, and you would never have seen me again. The swimming team that's over there now. This is not the athletes fault. This is not me bitching about Paralympic athletes. This is me being honest and hoping that we can figure out a way forward because we've got Brisbane 2032 looming and something has to change drastically, not just for us to become a more successful Paralympic team, but because kids with disabilities deserve what I had. The current swimming team has. Scooter Grant. Patterson a low class. l think he is S3 or S4. And Kelly again, I think he's S3 or S4.Rachel Watson, I think is an S4. And I think I saw another girl that's new. That's an S seven. She's in the chair. So that's four. That's two women who use wheelchairs on the entire swimming team. So in other words, when we watch the Paralympics we're going to have S1 to say S7 male and female, every event with no one in them. Our Australian women's wheelchair basketball team did not qualify for the Paralympics in Paris. We will not have the women's wheelchair basketball team in Paris. Australia will not have a team there. Goalball. Both those teams did not qualify male and female goalball as vision impaired athletes, so Australia didn't qualify for that either. I think they came 33rd World Athletics Championships Australia. I didn't even know those 33 nations actually competing in athletics at that at that level. Again, I'm only saying this because I want the sports to be made accountable because they're getting funding for us, and if they don't want to do it or can't do it, then give it back because. Right now. If the Broncos didn't make the finals, the CEO and the coach would be held accountable. We are now commercial. We are now funded fully and we've got the NDIS running alongside of it. So really and truly we have to look at this because the Paralympic team. Is a mirror to the disability community. We have a chance to be honest about it and say the Paralympians aren't doing well. If they're not doing well, then of course we're not doing well. Isn't it interesting that we as a public expect and think everybody with the disability should play or be Paralympians? So I do the most extreme level of activity or elite sport, even though we might like for me have a muscle disease and I can't wash my hair or you've got all four limbs missing or whatever it is, right. But then they'll come back to Australia and then I might better get a job as a social worker. But oh, and I can play wheelchair rugby, but you can't be a lawyer, or you can play wheelchair rugby, but you can't be, you can't get on a plane in this country because you're disabled. So isn't it interesting how we expect people to do that stuff? And being a Paralympian, as you know it is. I mean, if it was easy, I'd still be doing it. I think we've had seven Aboriginal and Torres Strait Islander Paralympians in our history. Over half of the community. Over 50% of the Aboriginal Torres Strait Islander community identify as having a disability, and I spend a lot of time in Aboriginal communities in my work, and I would say it's even higher than that. And those kids don't even realise I can play disabled sport. They've never heard of it. They don't even know they're disabled. Most of them have been classified as foetal alcohol syndrome, which is just a racist. Non, you know, medical clinical diagnosis, which nobody asked. My mum did she drink when I came out with my disability? We need to bring back situations where people with disabilities can race and only be around people with disabilities, especially those. High support needs severely disabled kids. Because if that hadn't have happened to me, I would not be the confident person I am today. We're going to say it. We're going to say Paralympics hit rock bottom. And I hope that with the rock bottom, the media cover it properly. And I hope from there we start trying to figure out a way forward because Brisbane 2032, the everyone's going to expect us to win. And it's going to be really embarrassing to have these accessible stadiums we keep talking about with no Paralympians. So it's time. It's time.
Peta [00:25:45] Thank you for listening to this week's episode. And thank you, Karni, for being so open and honest. Don't forget, you can always scroll back in the feed to listen to more episodes. Last week I spoke with Deanna. She has M.S. and she spoke about how she uses her MRI scans to create art. It was really fantastic episode. If you do enjoy this podcast, can I encourage you to share it with a friend, share it on social media or hit five stars? Hopefully five. On any podcasting platform you listen on, it helps more people find the podcast. Thanks so much for listening. And after a short break while I go on holidays, I'll see you next time. I would like to respectfully acknowledge the Wurundjeri people and Bunurong people of the Kulin 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 Nations communities who are disabled themselves.
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