"I'm proud of who I am, just as I am" Why disability pride matters

Kurt Fearnley: We've produced this podcast on Awabakal Land and we've spoken to people living and working on Aboriginal land across Australia. We pay our respects to the elders, past and present.

Kurt Fearnley: Hello I'm Kurt Fearnley, Paralympian and proud person with a disability.

Sarah Shands: And I'm Sarah Shands, Mum of a kid with a disability who loves life

Sarah Shands: Can you tell me a cool thing about deaf people in Australia?

Gillian Stewart: We have Auslan choirs where we sing with our hands

Kurt Fearnley: Auslan choirs are amazing!

I think I was about 5 years old. Sitting in my sandpit playing. And I loved that sandpit. It was the summer holidays and that dry heat of western NSW was baked into the ground. My cousins were over and everyone was getting ready to go catch some rabbits.

Yeah, I grew up in the 80's but it was more like the 1950's.

Mum came over as I was dusting the sand off my hands and said I couldn't go. That I had to stay behind with the grown-ups. Well they went back inside and then all the kids took off with the dogs. And I was left alone. Sitting in the sandpit devastated. Being out on the farm catching rabbits with my cousins and brother was the best fun. So I started crawling. I had tears and snot streaming down my face and I was calling out for them to wait. If they'd just wait for me to catch up. It would all be okay.

Then I heard footsteps crunching the dry grass. It was my older brother. He towered over me. Blocking out the sun and said; would you hurry up. You know you can do anything. So come on. Let's get going. I climbed up on his shoulders and we did catch up with my cousins. And he told me it was my job to hold onto the dogs. And that's exactly what I did. I was getting dragged all over the place, holding onto those things. My brother asked me later on why didn't you let go? Because he knew he was going to have to pay for all the bumps, bruised and cuts I got. And I said to him, you told me I could do anything. And I was never going to let go of those things.

In moments like these and choices my brother made all those years ago that show me my place was with them. Crashing through the bush, bumped, bruised and deliriously happy.

Sarah Shands: So one thing that I was not prepared for as a parent of a child with disability, was the conversation where she said — that she doesn't want to have a disability. That she wishes she was normal. I can't tell you how hard that was to hear.

Kurt Fearnley: Yeah, I've had that conversation with my mum. I knew I was different, there were things that everyone did that I just couldn't. And that was hard. So let's talk about ableism, the social model of disability and disability pride.

Kurt Fearnley: Have you ever found yourself thinking, aww look at that poor disabled person, their life must be so hard? I just couldn't live like that.

Sarah Shands: Or overheard a conversation at the school gate where parents are complaining about a difficult child that doesn't belong at their school.

Kurt Fearnley: The way you see people with a disability matters, because it will shape how you interact with us. And this is important, because it shapes — in part- how we see ourselves. Often people with disability are seen with sympathy, or fear. And sometimes we are told that we just don't belong. Jax Brown is a LGBTIQA+ Disability Activist & Educator and grew up in a small country town. Jax explain what it was like for them growing up.

Jax Brown: I was my parents first encounter with disability. And the messages that they got right from day one all the way through my childhood was that disability was this terrible thing that had befallen them. And that had befallen me and they must do all that they could to try and normalise my body as much as possible to try and, you know, get me to the point where I could go to mainstream school, but with a focus on minimising my disability as much as possible.

Kurt Fearnley: I've had medical professionals trying to minimise my disability my entire life. When I was little, my mum was told that my legs should be cut off and prosthetics fitted so I could stand. Not walk, just stand. All with the aim of making me look more normal. When Jax became a parent they started to reflect on the impact that the medical communities views had on how their parents saw them.

Jax Brown: I did a lot of thinking about what that must have felt like for them to be thrown into that world of disability as his terrible unknown. And the only voices you're hearing are the medical profession saying, this is this terrible, horrible thing. And if you do everything we tell you to do, maybe your child can have, you know, a slightly better life, but they'll still have this terrible affliction hanging around their neck kind of thing. So throughout my childhood, that was definitely the narrative that I was given about what my body meant and what my disability meant. And I had a lot of intense therapies every day and a lot of kind of normalisation procedures to try and make me look less disabled.

Kurt Fearnley: One day, completely by chance I was sitting next to the great Stellar Young on a flight and she introduced me to the social model of disability. This idea says that I'm not disabled because I'm in a wheelchair, I'm disabbled because of the way society is built and your expectations about what I can do or can't do. As I was processing this idea for the very first time Stellar looked at me and said "Oh my god it's like watching a baby fawn find their feet". We laughed, but that conversation changed me. And whan Jax discovered the social model of disability it too changed their life.

Jax Brown: I found this book on the social model and the history of disability rights. And looking back, it wasn't, you know, the most radical book. But it really shifted my mindset. And I started to kind of go out into my small country town where a lot of the buildings were heritage listed and not accessible. And think about what could the world look like if we thought about disability differently, if we prioritised access if we didn't frame the problem of disability as an individual personal problem, but as a socio-political problem. And, and then I happen to make a friend. I made a friend with a woman who was a number of years older than me, who also had a physical disability, and who was also kind of trying to rethink what this meant for her. And having somebody I could talk to and read books with and discuss ideas with and feel like she got it, and I got it. And it didn't matter if the rest of the world didn't understand it in the ways we were understanding it. Now. That was super important.

Kurt Fearnley: But the social model of disability isn't perfect. For people living with chronic pain or intellectual disability, it doesn't really change very much for them. And while it would go a long way to make life better for lots of people with disability, I think we need to acknowledge the parts of the disability community that it doesn't quite work for.

Sarah Shands: So what is it, about how disability has been viewed in the past that shapes what we think today? Associate Professor Lorna Hallarahan prepared a report for the Disability Royal Commission which looked at the history of disability policy in Australia.

Lorna Hallahan: The sorts of policies and mechanisms that we've used to sequester people have changed over time, gone from prisons to mental health asylums to, to disability specific institutional settings through to smaller organisations. But we, I could see that there was this, this impulse of expulsion, about how do we gather people up? And where do we put them, and we justify that on the basis of doing the right thing for those people. But the more that we listen to what comes out of those settings, the more that we realise that these are sites of maltreatment.

Kurt Fearnley: When a child is born with a disability their parents are often told with an apology.

Voice Over — I'm sorry, your child has a disability……

Kurt Fearnley: And it sets the tone for that family. They are off on a course of trying to fix something about their child. And that's not the right message to give parents or children. Disability is just one part of who you are and I think that's sometimes lost when you're surrounded by people trying to fix you.

Sarah Shands: And I reckon most Australians think we have an inclusive society, but we do still practise segregation. Exclusion often starts at early childhood education with kids as young as 3. They're told for the first time that there isn't a place for them with the other neighbourhood kids.

Lorna Hallahan: Giving that message that rejection message, you are not worthy, you do not belong in the in the in the world of children or of the wider community has a very strong potential to cause people shame. And so that's the connection. The way that I think about it is that shame is the voice of rejection whispered in the inner ear that says I am not worthy.

Sarah Shands: This is one of the things that keeps me awake at night — because society has an inherently negative view of disability this may influence how my kid sees themselves. But one thing that has really helped has been taking time to listen and connect with other people with disability, particularly deaf adults. The one message that comes across again and again is that my family all needed to learn Auslan, to give us access to deaf culture and the amazing deaf community here in Australia.

Kurt Fearnley: Things I know now as a proud person with a disability are things that would have really helped 14year old Kurt, who was having a pretty tough time. And getting to the point I'm at, practising disability pride, it was a pretty long path. Would I change anything? Absolutely not. Lara McFarlane is an artist and disability activist who initially felt like she needed to hide her disability.

Lara McFarlane: Before my brain injury, I was quite involved in community and grassroots activism, and environmental activism in particular and so I think when I found self disabled, I felt really, really shocked at the way we were treated. And I didn't see anyone speaking back. And I now think they were so institutionalised in disability services that we didn't even have the ability to make our own a cup of tea or make a decision around that. I used to look around me in my institutional settings, and in my self advocacy groups, and I'd see, really powerful people. But as soon as we walked outside we weren't being given that respect. And really early on I felt shame, I felt, I kept feeling shame and I similarly, felt pressure to hide it.

Kurt Fearnley: Ableism is something that I wrestle with. It's this thing that you do, and you probably don't even realise you're doing it, but you try to fix me, or make assumptions about what I can or can't do. Internalised ableism is even tougher to break through. Because I think that about me. When I come across a set of stairs, I think it is my problem that I can't get up them because there is something wrong with me.

Lara McFarlane: Internalised ableism expresses itself as shame. But it's not a real shame. Because you haven't done anything wrong. You're internalising the attitudes of society, and society does not value disability. So it suddenly made sense now why I had this shame. And then I realised it definitely wasn't my shame. And that the antidote to it was to embrace disability. So around that time, I also learned about disability pride. And yeah, so by identify embracing my identity as disabled, it would give me a stronger voice.

Sarah Shands: Akii Ngo is a model and disability activist and found disability pride when they started working in this community.

Akii Ngo: I'm proud of who I am just as I am. Even if that includes a body that doesn't work the way that you think it should work. And it's, it includes a living in pain, yes, I would choose not to live in pain. But I don't have that choice so why can't I just be happy with who I am and live my life and do all the things that I want to do? And be be out there and be happy with who I am and not stress about all these preconceived notions of how I should be.

Kurt Fearnley: Creating more inclusive communities will have huge benefits. Not just for the people with disability, but for all the non-disabbled folks too. Let's look at how First Nations Australian's did disability. Worimi man Scott Avery is the Policy and Research Director at First Peoples Disability Network.

Scott Avery: So out in western New South Wales, there's this archaeological site at Lake Mungo. there's this single Rightline footprint. So it goes right footprint, right footprint, right footprint, no corresponding left footprint. And the archaeologists who went and looked at that were kind of baffled. And they asked the elders? it's a one legged man, and they're on a hunt. And the reason we tell that story, it's actually emblematic of the indigenous cultures of inclusion. There's no word for disability indigenous cultures is this idea that people are valued and respected for their inherent worth.

Kurt Fearnley: The fight for inclusion burns deep inside most people with disability. And it sits alongside any shame that a person may feel. And I think that we shouldn't let the shame and the trauma that we can feel dominate us. Lorna Hallahan has mulled over this idea.

Lorna Hallahan : And so every person who experiences that brings a gift to us, which is often the silenced if of hope, and of desire for something different that I believe sits there always, even though we may not be able to see it. And sometimes in solidarity, we have to carry that hope for people, as they begin to sort of spread those wings and let them dry and then see what it feels like to lift themselves with them.

Kurt Fearnley: And that is different from being gathered up and segregated from the mainstream. It's finding belonging on your own terms. In your own way through sharing your experience. But this journey isn't easy and often the community doen't help. Scott Avery again.

Scott Avery: This young Aboriginal man, he said as part of my employment I've got to go into town and speak with a clinical psychologist, because I'm on an employment support program. And that's great. Well, I'm in there for 20 minutes. But then I walk out. I can't get the bus, the bus won't stop for me. So I gotta walk home. And then the name calling starts, and it happens again, and again. I'm surrounded by it, but right at the end, and he sort of points to his chest. I know, there's something stronger here. I've just got to get here. This kind of intangible of hope, still sits there.

Kurt Fearnley: Within our grasp are antidotes to the shame and trauma that comes with disability. Adopting the social model of disability, that is, it's not my disability that is preventing me from getting into that building, society is preventing that because they didn't build a ramp, it neutralises ableism and all the horrible things that accompany it. And the disability pride movement goes a long way in dealing with the internalised ableism that eats away at people's self worth. But it can't just be left with people with disability to fight for inclusion. We need the whole community to see us as we are. Embrace us for who we are. And see that we have a place in your schools, workplaces and pubs. So come one it time to Let Us In!

Sarah Shands: Up next on Let Us In…

El Gibbs: I had spent most of the time during COVID Just working really hard and working hard for my community but working hard around, advocating for disabled and sick people and, you know, writing submissions and talking in the media and doing all of that work, and almost pretending like it wasn't happening to me, or not acknowledging how difficult it was for me, so to actually turn around and write about my own experience. It's not something I usually do and it was very challenging to do

Kurt Fearnley: That's up next on Let Us In. If you like what you've heard, why don't you leave us a review and then share this episode far and wide.

Kurt Fearnley: This podcast has been produced with the support of the Melbourne Disability Institute and the University of Melbourne. The Executive Producer is Sarah Shands of Point 5 Productions. Fact checking by Lisa Herbert. Big thanks to Blythe Moore, Phil Ashley Brown, Simon Scoble and Nicole Bond. Sound engineer is Grant Wolter.