Podcast: Evolution of Self-Understanding

 

Podcast Transcript

 

Belle (Host)  

 

Hi, the Purple Orange Podcast has its first ever host! Me, Belle Owen. As a disabled woman, I'm really excited about being able to share the stories of my community. Quite often we're misrepresented in the media. Journalists who don't have a good understanding about disability are the ones who are choosing the words, who are writing our stories. And so, it's important that we have a space where we can tell our own stories, in our own words, in our own ways. 

 

Language is a powerful tool that's ever changing. As an organisation, currently Purple Orange uses the language of 'Person First'. The point of 'Person First' language is to highlight the fact that we are people first, and while disability might be part of our identity, it isn't all of who we are. So in all of our reports and publications, when we talk, we say 'person living with disability' or 'people living with disability.' 

 

Personally, I choose to use 'Identity First' language. That means that I refer to myself as a disabled person. I choose to do this because when I speak about myself and use other descriptors, I don't have to imply my personhood. I can say that I'm a woman, and my personhood is implied. But somehow, if I say I'm disabled, there needs to be other considerations made. 

 

I'm proud of my identity as a disabled woman, it's taken me a long time to build up that pride. So I think it's really important the language choices that I make. While Purple Orange uses 'Person First' language, we recommend that when you're speaking to people, you can take the cues from the language they use, or ask them what their preferences are. In the podcast, we'll go back and forth between 'Person First' and 'Identity First' language based on the preference of the person who the story is about. This may sound trivial to some, but language shapes the way we think, and the way we see ourselves in the world. This is something that Leanne Leach knows all too well. Carey Scheer has the story.

 

Carey (narrator) 

Before I met Leanne, I did the typical thing. I scrolled through her Instagram account to try to find out more about her. And this one post really popped out to me. It's a beautiful photo. She's standing in a doorway, and leaning on a cane wearing this teal leopard print skirt, which she's holding slightly lifted on one side, revealing a uniquely scarred leg. And the post is announcing that she's signed up to a modelling agency. 

 

Carey (as interviewer) 

Would you do me a favour and just read out that Instagram post that you did? 

 

 

Leanne 

Yeah. Let me have a look. Got it. So I wrote, 'I don't usually see people in the media like me. Big, funky chunky scars, uneven posture, a hearing aid user, a walking aid user, bad bones, full of metal, a living medical group project. It can feel isolating. I want to show other people with marginalized patchwork bodies that their one of a kind body is a work of art. Here's to hoping I can make my younger self proud as hell.'

 

Carey (as interviewer) 

What would your 12 year old self think of you now?

 

Leanne  

So that's really hard to say.  So different from what I actually thought I was going to be doing.

 

Carey (narrator)  

I didn't know where our conversation was going to take us. What emerged was this insightful reflection on her own evolution of thinking about being a disabled woman. Those are the words that she prefers to use to describe herself. For her, this journey started in grade seven.

 

Leanne  

I felt a stinging in my leg and I said to my mom and dad, oh, you know, my leg's stinging so much. And really, I think I was just trying to get out of school, honestly, like, it wasn't even that bad. 

 

Carey (narrator)  

It worked. She got out of school to go to the doctor. A whirlwind of tests and a few days later, they had the diagnosis, a form of bone cancer.

 

Leanne  

Being an 11 year old kid, I was like really bragging. You know when kids notice that they're special for some sort of reason, they really cling on to it, and it becomes like an attention thing. And I was like, Oh, yes, it's because I have cancer. And you know, it was kind of like I would just say it willy nilly, you know, to anyone who would hear.

 

Carey (narrator)  

As you can probably guess, that initial fun novelty phase didn't last long.

But we are going to skim right past all of the medical stuff because that's not what this story is about. It's about everything that comes after.

But you do need to understand that it was a scary traumatic time. She spent a solid year living in hospital and really the next seven yo-yoing in and out. She permanently lost her hearing as a side effect of the chemo. So she became a hearing aid user. And because of the surgery she had, she also became a wheelchair user for a few years before eventually using a walking aid. When she finally did go back to school, as a wheelchair user, she could only take classes on the ground floor because there weren't any ramps or elevators. But at that time, she didn't know that was a problem.

 

Leanne  

Which is just wild in today's climate. But back then, we were barely even using the Internet. There's no community of disability advocates saying, "We won't put up with this." So everything I was going through, was like, the first time, the first one, the first disabled kid.

 

Carey (narrator)  

Of course there were disability activists already, and she wasn't the first kid with a disability. But they weren't on Leanne's radar.

 

Leanne  

I find it traumatic for what I went through. But I think it is more traumatic to see somebody go through that knowing you can't do anything. Like I was always so strong for my mom and dad, because they were like just going day by day hoping their kid didn't die.

 

Carey (narrator)  

Because of the weight of this, Leanne became mature way beyond her years.

 

Leanne  

I was surrounded by adults who couldn't cope with what was happening to me when they were witnessing it. To be able to cope mentally, they need to be able to say, 'Oh but look how inspirational she is. Look how mature she is for her age. Look how positive her outlook is." And as a child, you pick up on those tones of voice, and you validate those people's feelings. That's no one's fault. It's not the hospital's fault. It's not my family's fault. It's not my fault. It's not the charity's fault. But the situation is that it was very me, consoling other people, making them feel better.

 

Carey (narrator)  

And what seemed like a natural progression of all of this, Leeanne started giving public speeches.

 

Leanne  

I definitely knew that I was,  an inspiration. I was happy to go and do speeches. Like my photo was in newspapers, I would go to fundraisers, I was making these speeches saying, I'm almost glad it happened to me because it's made me who I am all these things, you know, I thought this is me. It's what my life is about.

 

Now, looking back, I know I was becoming inspiration porn.

 

Carey (narrator)  

If you're connected to the disability community, you probably know that term, inspiration porn. The phrase was coined by the late Stella Young, and she gave an incredible TED talk about it in 2014. If you haven't seen it, do yourself a favor and watch it right away. It is that good. But the gist is that 'inspiration porn' refers to the objectification of one group of people for the benefit and inspiration of another group. So telling somebody, they are an inspiration to you just because they live with this ability, that is an example of inspiration porn. 

But going back to Leanne, at that time in life, Stella Young hadn't even given that Ted Talk. So these terms were definitely not in her knowledge bank. But even without the phrase, she decided she had to forge an identity beyond being an inspiration. And so at the age of 18, when she was asked if she wanted to give another inspirational speech, she said no.

 

Leanne  

That was the first time I had said, "No, I don't want to. I need to actually separate myself from this because I need to have my own life."

 

Carey (narrator)  

And really, she's at the age where everyone's reinventing themselves. You're coming out of high school, meeting new people, you have a chance to start fresh. And so Leanne replaced inspiration with humor. With her friends, and definitely every time she met someone new, she'd make a joke about her disability, and being a cancer kid. It was her way of making people feel comfortable with having the conversation.

 

Leanne  

So I would try and get in before that point of it being brought up awkwardly. The joke factor, that was my in for the conversation. I don't even know how to explain it, but it was just real dark humour type thing. Which you know what, I still make those jokes today. A joke is a joke. If it's funny, it's funny if it's not, it's not. But, I would go to an extreme where I would, I would be having just a regular conversation, and then I would make sure I'd make the punch line, "and you know, because I had cancer and everything."

 

Carey (narrator)  

At that time, Leanne would have told you, she was on top of it, and that she had a really healthy relationship with her disability. Then an interaction with this guy, she'd gone on a few dates with really rocked that view.

 

Leanne  

I had come to the conclusion that I didn't want to pursue a relationship, I just want to be friends with the person. This person is like, really disgruntled that I felt that way. And, like I just made an offhand joke saying, "You know, because I use having cancer to get attention all the time." Because they were upset with me, they replied with, "Yeah, you do, though." 

 

Like I literally had a pit in my stomach and I've never forgotten it. That was the first time someone had not laughed along with the joke with me. That was like a real defining moment. Like, don't get me wrong, this person is absolute trash. But from that point on, I sort of reflected on myself and said by making these jokes, and getting people to think that I'm really not bothered by it, I've allowed someone to take control of the narrative of who I am. And I stopped doing that from then on. 

 

But then I went through a stage of like separating myself completely. It's not who I am. I don't want to discuss it with anyone, because they can take it away and make it whatever they want at any time. And so that went on for a few years.

 

Carey (narrator) 

Again, you got to realise that up until this point, she was not connected with the disability community. Everything, she was just navigating it on her own. But then something happened. Through social media, she found her way to a bunch of empowered men and women living with disability.

 

Leanne  

And now I have all these people on social media who I relate to, who are so proud of their disabilities, like it's helped me take control of the conversation, not be scared of the awkward silences either. Like in the past, probably two years, I have been able to vocalize the way that I'm feeling, call out things that have made me extremely uncomfortable for years and years, because I have the vocabulary created by other disability advocates. Being able to say that's inspiration porn. Refusing access to this person, saying it's too hard, that's ableism. I didn't make this stuff up. I'm not the first one. But that's the whole point of being able to push these boundaries of what is accepted by society, so that we can help other people who are coming next.

 

Carey (narrator)  

And remember how this story started with an Instagram post alerting the world she'd signed up with a modelling agency? Well, that's Leanne playing a part in pushing the boundaries of what's accepted by society. 

 

Leanne  

I don't think I'm Gigi Hadid. But I also want there to be the option for someone to select someone like me. The concept of a model is completely constructed. We've made up a narrative and an ideology of what a model is. So why can't I be a model? I'm a size 14, wonky, hearing aid using, scar filled woman. Why is that not a model? And if I'm not seeing people like me, why don't I just do it?

 

Belle (Host) 

If you want to know more about Leanne, you can follow her on Instagram @tipsforsinners. 

 

I hope you enjoyed that story. What I take away from it is that social media hasn't just opened up our choices around language, but it's also given us new access to community and also new control over choosing where we're seen and how we're seen and who we're seen by. 

 

We'd love to know what you think. Let us know on Facebook, Twitter or Instagram. Or feel free to send us an email at stories@purpleorange.org.au.