A story of disability pride
In 2017, Melbourne based artist and disability culture activist, Larissa MacFarlane created her first disability pride mural. It was a way for her to express disability pride. But Larissa has not always had that pride. This is her story of disability pride.
“I’m 51-years-old, and I also am 21-years-old,” Larissa told Inform. “I have a brain injury.”
“So, I acquired a brain injury coming up to 22 years ago. I think living with a brain injury, like probably living with any other type of disability… makes you really different in the world. And for a long time, I found it really difficult to sort of identify with my brain injury in a positive way, because all the messages around me [were] sort of saying that I was a tragedy, and that it was so sad that I had lost, you know, things and I was also seen as difficult and so it took me a long time to sort of start to see my brain injury… see the great things that have come out of it.
“And also, to see the value in disability and disabled culture. And part of that was owning how old I am. Because literally, when you have a brain injury, your world changes, your personality changes, and you have to learn everything again. And in some ways, I’m really young. But I’m also really old.”
Self-advocacy provides path to disability pride
Larissa’s path to disability pride was encouraged and supported by self-advocacy. Self-advocacy provided a way for Larissa to connect with disability pride
“I feel like I’m a child of self-advocacy, because I’m a child of that being grassroots being disability led, speaking for ourselves,” Larrisa says. “And I suppose my passion for making artwork around disability pride also started in those spaces, because I would look around at my peers. And not only did I feel comfortable there, and did I feel able to identify with confidence as being disabled and having a brain injury…whereas I wasn’t able to do that so much in other space, but I also looked around and I saw amazing people.”
“I think that people with brain injury are actually some of the most interesting people on the planet. But it’s such a well-kept secret!
“But I also saw that these amazing people didn’t have a level of confidence or pride in themselves. Like I didn’t. We didn’t respect the journeys we’ve taken and the stands that we make and the work that we do. We weren’t, we find it difficult to value it. And it took me a long time to work out why.
“And so I pondered this question for years, because I found myself, as an individual, I would experience shame about identifying with disability or identifying with a brain injury, outside of those safe spaces, those spaces in my community. As an artist, I got messages that I really shouldn’t talk about my disability because my art wouldn’t be taken seriously. And I and so I did, I tried to keep this a bit of a secret or hide it, because I really just couldn’t understand why I kept feeling this shame and this, this need to silence part of myself.”
Coming out as a handstander
Larissa says the turning point for her came about eight or nine years ago when she made the link between a secret skill and her disability.
“I started doing handstands six years after my brain injury. And I’m not even sure why I started, I was completely obsessed. I was 35. I’d never done a handstand as a child. But I was convinced that I needed to do a handstand. And it took me months and months and months and months. But when I finally got there, I just kept going.
“I suddenly realised I’d been doing these handstands every day for seven years. And it was a secret, and no one knew. Very few people knew. And it was partly a secret because it’s, it’s not a performance. It’s something I do just for me to make myself feel better, but I was hiding them… I felt that I needed to keep this hidden. And I realised it was because it was connected to my brain injury.”
After making this connection, Larissa decided that she needed to “come out as a handstander” and “come out about [her] brain injury”.
“So, it was sort of quite subtle as a, you know, it wasn’t loudly saying disability. But I came to understand that this was about my way of trying to celebrate who I was and try to be public about it. So, I look back and I realised that was really one of the beginnings of exploring how to do this thing called disability pride.”
The disability pride mural
In 2017, Larissa created her first large scale disability mural. It was a part of a local Arts Festival and went up just a few days before International Day of People With Disability. Larissa put a call out to friends in the disability community to contribute, but not everyone was interested.
“I think that being part of a disability pride project was a bit much for lots of people. And, or just, you know, a difficult concept. A lot of people did hop on board, and they were like, nervous, really nervous. Because it was a big step to identify in public space.
“I asked people to send me their artwork, send me their images of themselves, send me anything, anything really that represented themselves.
“I invited people to be political, if they wanted. To be, you know, to be strong, to be or not just to, to be who you are. Because I think that I was interested in exploring what is disability culture, and that is really anything that all of us are. And we’re all so diverse, and we all have such different experiences. And I wanted to unite it all under a disability pride banner, which is what we did.”
Disability pride mural a community effort
Larissa’s art practice is paste ups and so after putting the call out to her community, she collected the images and words she was sent and had them printed. It was then a group project to get the images and words on the wall.
“We all turned up on the night. We had a little scaffolding, mini scaffolding, and we pasted it up onto this big, big wall. This is a big wall. It’s like 16 metres wide. And I think it’s 10 metres high. Not that we were able to get that high. We only got up about two metres. But still a big wall. And we pasted up. We had a wonderful time getting our hands mucky with flour and water glue. And we made this beautiful mural.”
Unfortunately, the mural was taken down only a few days later. It was removed the anti-graffiti team employed by the local council. For Larissa, the removal of the mural is something that was shocking and painful.
“My vision for it was in so many ways, so naïve. So I envisaged in 2017, that we would put up this mural, and it would just have such a big impact, and everyone would, all the disabled people, all my friends would be going ‘Oh, this is awesome. Can we be part of the next one?’ Because it was, we’re going to do it annually. That was my vision. And also that people would see it and suddenly understand that, and stop being so ablest.”
While the original mural was taken down, Larissa and many of the people she worked with on the first one did replace the mural as part of the Fringe Festival. That mural is still up in Melbourne today.
Pride as practice
Larissa sees disability pride as a practice: “It’s something you just don’t suddenly get you don’t suddenly go, hey, I’ve come out. I’m disabled and I’m proud.”
Disability pride means lots of different things for Larissa. From owning her story to challenging attitudes and building community.
“It’s about owning my life and owning my stories and being able to identify with them in a way that doesn’t include shame. In a way where I can be proud of who I am and the steps I’ve taken, the interests I have, the things I do.
“It’s also about challenging attitudes… it’s about changing attitudes and shifting it away from sort of negative stereotypes. Disability Pride also is about shifting away from inspiration porn, as well. It’s also about building a sense of disability community and disability culture.
“A big part of disability pride, for me was learning how to challenge, having a framework of understanding to challenge the shame, which I came to learn was internalised ableism. And that’s where the people, my culture around me is ablest and so I can’t help living in this culture to take on that ableism and then I find that I’m turning it onto myself. And so, I’m then finding fault with myself because I’m only taking on the attitudes of society.
“I think I saw that disability pride was like an antidote to that. It was a way of practicing and saying, there’s nothing wrong with the word disability. There’s nothing wrong with the word disabled.”
Larissa spoke with the Inform podcast about disability pride. To hear more of her story, you can listen to that episode.
Ready to read more? Try these Inform links:
In our own voices: 5 Australian books about living with disability