Emily Ladau: When you're not the only one.
What is it like to grow up in a disabled household when you, yourself have a disability? The insightful Emily Ladau chats to Peta about how even when your mother has a disability too, it doesn't mean a life of disability self acceptance by default.
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The website: www.icantstandpodcast.com
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 love to answer your questions. This week I have a fantastic guest on the pod. Her name is Emily Liddell. Emily has a unique experience of growing up with a disability, and I can't wait to share it with you. So without any further ado, let's hand over to Emily.
Emily [00:00:48] I am Emily Ladau. I have a physical disability called Larson Syndrome. It's a genetic joint and muscle disorder. I am a wheelchair user and my mother and her younger brother, my uncle also have it, so it impacts them a little bit differently than it impacts me. But it's very much a part of who I am. It's quite literally in my DNA and it's always an adventure because since my mother uses a wheelchair also, it's always like wheelchair central in this house.
Peta [00:01:26] So you must be very used to this, Emily. But your upbringing, from my perspective, is very unique. What is it like to have a mother that has a disability?
Emily [00:01:35] I think a lot of people would assume that it's a really tragic thing, but for me, it's something that I feel very grateful for because there was always a presence in my life that showed me what my future would look like in terms of a disabled person. And I don't take that for granted for a second because I know that there are so many disabled kids who don't really get to see disabled adults, don't really get to connect with a disability community. And, you know, granted, my mom is one person. I'm one person. And it wasn't really until I started getting a little bit older that I started to understand that there were lots of other disabled people in the world. But my mom, she has always been a fantastic advocate and really was able to show me the ropes. So I think in more ways than one, I'm really lucky to be in this particularly unique situation.
Peta [00:02:43] It's funny you say that. Most people think it's a tragedy or that's the perspective that you start. Started that sentence. Because I don't view it is a tragedy at all. If they think they got a little bit envious to think that you had that illustration of what it is to be disabled from the very moment you opened your.
Emily [00:03:03] Eyes.
Peta [00:03:05] To have that sort of role model, for lack of a better word, to illustrate what a disabled life is. And you know that disabled people do exist and we have normal lives. Like, I think that's amazing.
Emily [00:03:20] I've come to realise that disabled people generally think it's pretty cool. And non-disabled people are kind of like, Oh, that's kind of sad. And then you have to sort of bring them over to an understanding that, no, it's not that. It's really just a part of our lives. And that doesn't mean that it's easy all the time, but it's something that I value so deeply.
Peta [00:03:51] So do you think you've viewed your disability differently? As far as, you know, disability being normal in your world and not being the odd one out?
Emily [00:04:02] I really wish that I could say that's true. And I wish that I could say I grew up being super well-adjusted. But I think that the reality is, even though I had that built in role model, because of the world that we live in, where we are constantly bombarded with these messages that we should not accept ourselves for who we are. I think both my mom and I really have had to find it within ourselves to push back against that. And it's a journey that we're still on.
Peta [00:04:36] So do you think that you or I'm just going to speak to you because your mom's not here to speak for herself? Exactly. Yeah. So. So, do you think you have ever felt pressured to be, like, the perfect disabled person in quotation marks? Like, do you think is that ever been a thought to you or have you just thought, no, this is me, and I'm going to be the person that I was always meant to be.
Emily [00:05:03] It's interesting because it's not that I feel that I have to inspire anyone, but I think I spent so long when I was growing up feeling like I needed to prove myself and prove my worth that now, even though I understand that's not really true, it's something that I have not been able to shake. And I don't know if you feel the same way, but for me, I feel like I always kind of have to be on. I always have to be ready to educate. I always have to be ready for a conversation about disability and. It can be a challenge to to feel that way.
Peta [00:05:45] Do you think you're ever not going to be an activist, really advocate? And if you ever decided not to. What would that look like for you? Do you feel like you've been almost pushed, not pushed, but like gently guided into advocacy because of your circumstances?
Emily [00:06:06] So my plan growing up was always to be a high school English teacher. That was what I thought I was going to do. It was what I went to college to do. And then midway through, I had a bit of what I call a quarter life crisis, where I started to realise that I was being tokenised for my disability quite a bit and I wanted to take control of that narrative and that story. And I had no idea what that meant or what that looked like. But I knew that I somehow wanted to turn advocacy into a career. I want to be kind to myself. And sometimes I think that the work that I do is a way to show kindness to myself, because it's a way to remember that I and all disabled people are worthy as whole human beings. And it's also some of the hardest work because there are lots of people who are very quick to tell you otherwise. But knowing that I am working every day to love myself through the work that I do is a really powerful thing.
Peta [00:07:40] Even though this has been quite a heavy conversation, not all advocacy work is heavy. I have to say, I'm very jealous. You've met one of the most famous people in the world. Tell me what it was like meeting Big Bird on Sesame Street.
Emily [00:07:57] I'm glad that you brought up that. Not all advocacy needs to be heavy because it's true. Sure. To hit very difficult times right now, for sure. But there can be a lot of joy that comes from advocacy, too. And for me, I got lucky because I got to experience some of that joy. Relatively young. When I was ten years old, I appeared on multiple episodes of Sesame Street, and I got to talk about what my life was like as a disabled kid. I was just, you know, another kid in the neighbourhood. And it was an early indicator to me that my story had power and would resonate with people and could teach people. And getting to meet all of my favourite Muppets on top of that was wild. There's something really cool about talking about disability with Big Bird and just having a conversation and being another kid in the neighbourhood who is accepted into the group like everybody else. And it was pretty amazing and Big Bird is super cool. Although my personal favourite is always Elmo. Always Elmo. Elmo.
Peta [00:09:18] Were the sets accessible to you? First of all, did they have to adapt anything for you to go on set?
Emily [00:09:24] You know, it's really funny that you ask that. No one's ever asked me that before. There's a scene where I am sitting on the steps one, two, three, Sesame Street. But I'm just sitting there and my wheelchair is like up at the top of the steps. They lifted it up to the top of the steps. And when I think about that now, I'm like looking at it pretty recently, actually, for some reason, just watching a clip. And I was like, This makes no sense. Where is the ramp? Yeah, not very logical.
Peta [00:10:00] Not only would you I'm assuming you would have been very popular at school that week. But, you know, to say that you were that form of representation in the early 2000s is just awesome.
Emily [00:10:15] That was what was really cool for me because before me there was another young woman who was a wheelchair user who was on the show and then she had gotten older and then they were looking for someone else. And so she was one of the few people that I ever saw growing up that really made me feel seen. And then to get to be that for however small amount of time for other kids was something I will never take for granted.
Peta [00:10:49] Very cool. And I have to say, with, you know, going into advocacy work so young, having family members with a disability, particularly someone that's close to you, is your mum. Does that mean that you don't have internalised fatalism?
Emily [00:11:06] Oh, I have so much of it. Oh, my goodness. I feel like all I am ever doing when I am not trying to work is sorting through my own internalised evil ism. I'm often the first person to consider myself a burden, which is so silly because I would tell anybody else not to think like that about themselves. A perfect example is I will be out and about on the streets and because my disability is apparent, I am always subjected to comments from people and, you know, remarks from strangers. And it take the toll after a while and you start to internalise that and think, well, if they. I feel a certain way about me, then maybe that's true. And you have to actively fight against that because it's not true. But it's a battle, I would say, inside of at least my mind every single day.
Peta [00:12:11] Oh, I'm with you completely. I constantly feel like I'm in the way, so I'm constantly apologising for being in the way, taking up too much space, worrying that I, you know, might accidentally run over somebody's fate, which I haven't done for years and years. But you just I am constantly apologising for being places.
Emily [00:12:35] That is so real. I do that all the time. You have just as much of a right to take up space. And yet I am constantly like, Oh my God, I'm so sorry. Let me move out of your way. It's like, I'm not necessarily the one in the way. Maybe you're in the way.
Peta [00:12:53] I want to also acknowledge that we're both sitting here as people who have a physical disability, and many other people have different disabilities with different barriers that they face every day that I necessarily can't understand. But I'm genuinely trying to always learn and better understand what their what their reality is. But you're trying to reduce barriers in another way, which is fantastic. You released a book and it's called Demystifying Disability. Can you talk to me about.
Emily [00:13:26] I would be happy to. And thank you so much for asking about it. The book that I wrote is meant to offer some insights on language and history and etiquette and media and culture and identity. But it does all of that with my lens because I only know my own experience and I can look outside myself as much as possible, which I try to do in many ways as I could. But the reality is that no one can talk about the whole of the disability experience when more than a billion disabled people exist in the world, and when disability cuts across every identity. And in a lot of ways, I have a lot of privilege to be able to talk about disability. And so that's something that I very much acknowledge. And it's also a challenge too, because disability is a global thing. I don't want people to think that. I think disability is somehow just limited to my own geographic location and experiences because it's not. But the book is really just one person's offering into the broader conversation around disability in the hopes that maybe it'll answer some questions for people and give them some of the tools that they need to start having conversations.
Peta [00:14:58] If you had to pick one section of the book that you really love or you're really proud of, what would that be?
Emily [00:15:05] Oh, that's a good question. And to be honest with you, I think it might be some of the earlier parts regarding language, because language is so crucial to how we think about disability. And I fear that we get hung up on language to the point that we're afraid to get into deeper conversations. And so for me, getting to really talk about a lot of the language around disability and hopefully offer people some of the tools and resources and insights that they need to feel more comfortable talking about. It felt like a really powerful thing to do.
Peta [00:15:54] One of my first episodes, a very early episode I did, was talking about the R word. And I think, well, of course that word is really hurtful. I also thought it was very important to explain why it is a hurtful and sort of explain to someone that has no understanding of what it is to live with a disability. I'm very proud of that episode because I think. Thank you. You know, we can all say woods are hurtful, but it's all about context of the word. Boy, that word came from. To better explain why that word should no longer be said.
Emily [00:16:33] There are a lot of people who I think feel. That people make too big a deal out of language. But for me, I really believe in the power of words and communication. And so I'm right there with you. I think that, you know. Creating space for people to really understand why something could be harmful or why something could be positive is so important. Because at the same time, as we're talking about the R-word being harmful, there are people who are being saying disability is harmful and I want them to understand that's a very different thing and disability is not a bad thing and we've just made it so because of the stigma that we place on it. Some of the greatest lessons that I have learnt about language and the things that could be harmful if you've seen them, have come from people who have taken the time to pull me aside and say, Hey, you shouldn't really say this or you should see this differently, or here's why what you said is harmful and I really value that and I recognise that that puts a burden on people to do the educating. But at the same time, when you pull someone aside and you try to meet them where they are and have a genuine conversation with them, I think it makes a really lasting impact rather than sort of shouting at them into the void.
Peta [00:18:08] So what do you love about having a disability, Emily?
Emily [00:18:12] I love the community that it has made me a part of and I love the people that I have met because of it and the path that my life has taken. And I realise that is in and of itself such a huge privilege to be able to say, because I know that there are so many people who do not have any positive feelings around disability. So I think it's a lot of the right place at the right time and the right people for me. But I just love feeling like I am part of a culture so much bigger than myself, and also knowing that there's always ways to adapt and figure things out and to be creative. I think that's a beautiful thing. Cheesy, but I do think it's a beautiful thing.
Peta [00:19:12] And is there anything you don't like about having a disability?
Emily [00:19:17] Honestly. The two things that I struggle with the most are, you know, the the painful aspects of it. And I mean that physically and emotionally. You know, chronic pain is very real and I struggle with that. But also the emotional toll of coming up against inaccessibility, coming up against discrimination and always feeling like I am on display when I am out in public. And so it's a challenge to balance that, but it's also something that I work on embracing whenever I can.
Peta [00:19:57] And what do you hope for in the future for people with disabilities?
Emily [00:20:01] I wish that everyone who was an advocate could just put ourselves out of business already. I think we're all going to be in business for a few more years or several. But really, that is my dream that, you know, we wouldn't have to constantly be advocating because we would live in a world that was already inclusive and accessible and accepting.
Peta [00:20:26] Thank you so much for being here. Emily, I've thoroughly enjoyed talking to you.
Emily [00:20:29] It's been great. Yes, me too. It was really a pleasure. Thank you so much. And thank you for such thoughtful questions and just getting to have a heart to heart chat. I really appreciated being on the show with you.
Peta [00:20:46] Thank you for listening to this week's episode. I hope you enjoyed it. I found Emily super insightful. If you did enjoy this episode, can you please share on social media with a friend or write me on Apple podcasts podcasts? It will help more people find the podcast. So until next week. Have a good one, guys. Bye.