On International Day for People with Disabilities, join Peta in a profound exploration of Disability Pride. Peta sits down with artist Larissa MacFarlane and activist Isabella Fantasia to discuss the complexities of disability pride and the often overlooked, pivotal history within our disability community.
Thank you to The City of Melbourne for supporting this episode.
Practising our Pride, Remembering our Ancestors Mural by Larissa MacFarlane: Located in Royal Lane on the south side of Bourke Street between Russell and Swanston Streets. Melbourne, Australia.
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Peta [00:00:00] I would like to respectfully acknowledge the Wurundjeri 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.
Peta [00:00:27] Hello and welcome to The I Can't Stand Podcast. The podcast answering your questions about what life is like when you have a disability. My name is Peta. I have cerebral palsy and I'm your host today. On the 3rd of December, we celebrate what it is to be disabled. Happy International Day for people with disability. For this very special episode. I have two amazing guests supported by the City of Melbourne with additional support by Women with Disabilities Victoria. I have Larissa MacFarlane, the amazing disabled artist who has some very exciting news for us and the very insightful Isabella Fantasia. So without any further ado, let's get in to the celebrations.
Larissa [00:01:28] My name is Larissa MacFarlane, also known as Lara, and I am a proud, disabled person. I'm also an artist activist. I live on Bunurong lands in Nam in Melbourne. I became an artist through having a brain injury, but also chronic illness, including lots of chronic pain and fatigue. And I have a genetic connective tissue disorder called Ehlers-danlos syndrome. And I also live with post-traumatic stress. All these experiences very much inform my work as an artist and an activist.
Peta [00:02:08] It's such a thrill to have you here. I have been an admirer of your work for a little while now, and it's such a pleasure to have you on because you are such a pillar and a strong voice in the disability community. There is a special reason why you're here today on the podcast, even though you are the amazing person that you are. It's International Day for people with disability. Can you commit myself and the audience in on why you're here today Larissa?
Larissa [00:02:37] Yes. Thank you for those very kind words. I'm here to share with you a mural that I made that is in the Melbourne CBD. At the moment it's called Royal Lane. So it's near the corner of Swanston and Bourke Street and it's our new Disability Pride mural. The most prominent part is the words disability pride written across the top. Those letters are actually using the bodies of local disabled people to spell out the words. But underneath that, there are portraits of six proud disabled women, all of whom have contributed significantly to the disability rights movement. On the other side. There are a whole bunch of women people doing handstands and that's actually my own self portraits because part of my disability pride practice, practice is actually hand standing. And that's how I actually sort of came to understand disability pride. So it's, it's very important to me. There's a number of walking sticks because I most of my disability is quite invisible. But occasionally I do use a cane and I've made many line of cuts of different canes. And there's a lot of kites that fly around. Kites for me. Represent US disabled people because kites fly their highest when they fly against the wind. And for me as a disabled person and knowing my friends, we do spend our lives going against the flow because we live in a world that isn't built for us, that sees us as a problem. And so we are always needing to creatively problem solve and, you know, speak back to to discrimination. And I want to acknowledge that and celebrate that through these kites.
Peta [00:04:32] That is a lovely metaphor. I've never heard it expressed both visually and verbally like that before. I really love that.
Larissa [00:04:40] I'll add to that. That part of where it came from was the number of times that I had been told after my brain injury that I needed to basically shut up and go with the flow. And whilst I do believe in, you know, accepting what's around you, that doesn't mean you should just shut up and go with the flow. And I wasn't able to go with the flow. And it took me a long time to work out that I'm not the only one. And it wasn't my fault that I was making noise about things. It's actually that the world has a problem. Society has the problem. The problem is not located in me.
Peta [00:05:19] I'm sitting here relating that to that very much. And I'm sure lots of people who are listening are relating to that. You know, it just goes to the difference between the social model of disability and the medical model of disability. And I think that ties really well into how disability pride can be really difficult for some people to get to. Talk to me about your relationship with Disability Pride. Why is it important to you?
Larissa [00:05:49] I truly believe that disability pride is our best tool for resisting ableism and for resisting discrimination. For being able to advocate not just for ourselves but for other people, for making the world a better place for disabled people. If we don't have disability pride, then doing that work is really, really hard. So I think the disability pride, as well as being, you know, promoting and cherishing the social model of disability. It also enables us to connect with community, with other disabled people. And it enables us to see our lives as part of a bigger culture. And also it connects us to our history. I suddenly had a realisation that Frida Kahlo was one of us. And I'm an artist. I'm a visual artist. I mean, Frida Kahlo is the most famous female artist in the world. So I know her work. I knew that she lived with chronic pain. She had an accident. She painted lying in her bed. But I had never heard her described as a disabled person. And so I had never realised that she was. And I mean, this is a moot point, but it was really a breakthrough moment for me to go, Oh my God, she's one of me. She's a part of our culture. And how come this has been invisible for me for so long? I often have. I have this thing where I channel people proud, disabled people. I channel them and I, I when I'm feeling lost and confused and scared, I think to myself, what would what would Lesley Hall right now? What would Stella Young do?
Peta [00:07:35] As you've mentioned, you've included some really key pillars and role models within the disability community. Can you speak to who you included and why they're important to recognise?
Larissa [00:07:50] There's six women. Stella Young. I probably don't need to tell you who Stella Young is but an amazing voice for disabled people. A comedian, a performer, a writer, an artist. Lots of amazing things and a great loss to our community when she died in 2014. I also have included is Lesley Hall, who I just mentioned. She was born in the 50s and she died just before Stella. But she was really involved in the disability movement, but also in worker's rights and arts. And she was fierce. The image that I've used for the mural is one that was made famous when it hit the front page of The Age in 1981. She's still on the stage at the St Kilda Town Hall of the beauty pageant, which was raising money for the spastic society. She was really protesting against the beauty ideal of which which disabled people are not allowed to participate in. But there was also this charity thing going on about raising money for those poor, ugly, disabled people. Laura Hershey is the only non Australian in this mural. She's an American activist, and she wrote this amazing poem called You Get Proud by Practising. "Remember, you weren't the one who made you ashamed. But you are the one who can make you proud. Just practice. Practice until you get proud. And once you proud, keep practising so you won't forget." Laura was a very accomplished artist, writer, activist, speaker. She also set up a violence prevention organisation and she was involved all sorts of places.
Peta [00:09:43] Talk to me about Margaret Cooper.
Larissa [00:09:46] So I didn't know Margaret Cooper when I made this mural. I wanted to make work about these these women that inspired me with their strength, these women that inspired me to stand up and be a proud, disabled person. But as I looked into it, I realised there are so many women and there are so many people that I don't know and I don't mind my history. So Margaret was one of these people and she's another Melbourne, a Melbourne girl. Probably the she was born in 1943, so she was around a long time and she died in 2018. She was very involved in campaigning for the rights of disabled women, particularly around reproductive rights and stopping violence and among other things. And she was also a co-founder of Women with Disabilities Victoria. And she has a beautiful quote that I included in the mural, which is "We should never forget our past history and remember it with horror and be proud of our survival. And at the changes we have made." This is the, you know, the the difficulty with disability pride. It's not really a difficulty it's the complexity where people. Outside the community and sometimes in the community think that disability pride is all about balloons and rainbows and fluffy things, but it's actually about doing the work. It's about acknowledging the shit that's happened, the horror, and it's about also acknowledging our survival and our resistance and our resilience.
Peta [00:11:22] Yeah, I agree with you. I think you're totally right a lot of the time. International Day for people with Disability is presented as something really fluffy and happy. And while of course it is equally, I think it's important to recognise and reflect on the discrimination that disabled people do still face. You only have to look at the Royal Commission this year to understand how far we have to go and how prevalent these issues are. And that's why I think it is really important that you've included these issues within your piece.
Larissa [00:11:58] Yeah. And also, just in our own lives, like living with disabilities is not easy. It can be really tough. Aunty Gail Rankine. She was an hour and Gerry woman from South Australia and she was a leading voice. One of the co-founders of the First Peoples Disability Network, an amazing organisation that has really, you know, inspired me to use that bad word. Aunty Gail also was really known internationally because she worked with the UN in and was I think was the first chairperson of the Global Network of Indigenous people. And she was a really strong voice for pointing to that intersection of racism and ableism. Yeah.
Peta [00:12:52] I think it was really important for someone like Aunty Gail to be represented not only because of her amazing work, but also because disability is so prevalent in our first nations and Indigenous communities. So I think having a role model represented in a piece like yours is really, really important. And I think particularly sitting here as a white woman, it's important for me to acknowledge that disability pride is. A positive thing for me and for many people in the disability community, that isn't the case. It's more complicated. Disability can be connected to trauma, and being proud and prideful in your disability can be a harder process to achieve, but it's still valid. The last person, but certainly not least that I want to talk to you about today. Larissa, is Daisy Sarong.
Larissa [00:13:56] Daisy was. I did know Daisy not well, but she was part of the self-advocacy movement. A woman with an intellectual disability was really important for me to include her because people with intellectual disability get left out a lot. I really don't understand why, but that's a fact. So, Daisy, I was really keen to include Daisy in this in this work also, because interestingly, Google doesn't know who Daisy is. And one day I will do some Wikipedia pages on these women. But I think Daisy did as much work as all of these other women. She was actually born in the 40s and she was taken away from her mother. She was taken away when she was only two and put in institution. She lived there until she was in her 40s when she was in there. She advocated and supported other people with their rights. She tried to teach somebody how to read and write, but she got in trouble for that because that wasn't permitted. But when she did get out, she did join with other people with intellectual disability and other allies in the campaign to get these institutions closed down. She also worked really hard to support people as they came out because suddenly they're living in a completely different world and quite overwhelming. A legend amongst many legends.
Peta [00:15:29] Oh completely. And I think that's where both the disability community and society overall really need to improve to allow people with intellectual disabilities to advocate for themselves and use their voice in any capacity that they can. For me. I think you can't overstate how important it is to have disability representation in the form of your artwork. Larissa In a physical place, to have somewhere for disabled people to gather and meet, reflect and actually learn about our disability history. It's fantastic to see.
Larissa [00:16:08] Yeah, I really, really wanted to create a space that when you come to the city, there is some way where you can go and feel like you belong. You can go down this line and see, say your kin, see your ancestors know that you have a place. I think the city can be. It can be overwhelming and a difficult space for many disabled people. So I wanted to create a little bit of a an oasis, a positive representation to make people think and understand that disability isn't this negative that we've been taught.
Speaker 3 [00:16:49] My name is Isabella or Bell, and I use she/her pronouns. I'm proudly and comfortably a neurodivergent Greek queer, asexual empath with a binge eating disorder and psycho social and learning disabilities. I passionately work and volunteer in the intersectional fields of youth, disability and mental health communities, where I focus on all three levels of systemic, statewide and local advocacy. I do this through my work at Women with Disabilities Victoria and through my online blog called Divergent Bell.
Peta [00:17:23] Well, thank you for doing what you do for the community. I really value you and your work and because you represent so many different groups and minorities. I'm really interested why disability pride is important to you.
Isabella [00:17:38] For me, disability pride is really important because it gives me confidence in my own identity. It gives me confidence to be able to access supports, for example, with getting support workers or accessing government government supports like the disability support pension. It also just personally for me, disability pride just makes me so much more compassionate for myself. When I found my own disability pride, it came hand in hand with having a lot of empathy and compassion for what I've been through prior to getting a diagnosis around autism and ADHD. Disability Pride doesn't happen all the time. You don't feel it all the time because there are very much days where you're just really wishing that you didn't have a disability because it's just really tough. The things that you feel, the fatigue that you get, the flares that you might get if you have a chronic illness, the pain, it's just a lot. And there are days where you just feel really beaten down. Then you don't really feel proud to have a disability and you're kind of wishing that you did it at the same time. And that's one side of disability pride. The other is obviously being really happy and proud of your disabilities, being able to show up, show off the amazing things that you can do with your disabilities. My disabilities are all invisible, so it's important for me to really be proud and to, you know, make sure people know that I have disabilities. And that's kind of part of the reason why disability pride is so important to me because it's something that you can use in a way that can help you become more confident in the world, help you find community and help you to make changes in the world as well. To make disability. Pride went hand in hand with being an advocate and a leader in the space and being able to learn about the disability community, about our history and being able to, you know, find connection and wanting to make our world more accessible and inclusive and to pretty much eliminate ableism.
Peta [00:19:46] Beautifully said. You know, as much as we don't want it to be, there is ableism in our world, as you just mentioned. So I'd love to hear how your relationship with disability pride has evolved over time. When did you first discover what disability pride was and and how do you feel about it now versus when you first were connected to that ideal?
Isabella [00:20:11] It wasn't until I really gathered my thoughts and reflected on everything, both my past and, you know, the year with having my first year with my diagnosis, that I found my disability pride and I found my confidence. It was through a lot of community support that I had found with it in that first year. It was through a lot of learning around about the disability community. It definitely has fluctuated since finding out pride in that first year, because there's definitely been times that have really tested how confident and how proud I feel in being disabled. There is really been hard days where I'm just wishing that I don't have any disabilities, that I could just be a quote unquote normal, whatever that is. I take it day by day. And it's been a complicated relationship, but it's been a really important one for me because my pride also presents in the advocacy work that I do. And I know that for me to do well and to advocate well within the advocacy space and leadership space, I need to be proud of myself. I need to be proud of my disability identities. And I've learnt a lot about myself from my disability pride, especially while I have been growing and learning more and more about the advocacy space, whether it be disability, mental health or even the intersection with disability and mental health and youth. It's an ever changing relationship that I just take day by day depending on what is going on inside my head.
Peta [00:21:45] Thank you for saying that. Somedays you wish you weren't disabled because I think that's something a lot of us are too scared to say that out loud, even though a lot of us feel that somedays like, Oh my goodness, this is so hard because of whatever barriers we experience for whatever reasons and how our disability interact with the world. And I think it can be really difficult to balance illustrating what it's like to live with a disability and making sure that society respect us and showing respect rather than pity. So, you know, I think we're still working on getting that balance. So thank you for saying that. For people who are listening to the pod and maybe aren't where you are proud person with a disability, how would you suggest that they become more connected with the community and proud of who they are as a disabled person?
Isabella [00:22:43] I think it definitely depends on the individual circumstances because we all go through different things as getting a diagnosis. And, you know, it depends on the supports that we have around us. And our for a lot of the young people that I've met out in my local community, that it's been quite challenging for them because they don't necessarily have that support from their family and their parents when it comes to their disability. And they don't necessarily have control over the supports that they have. So then feeling pride in your disability can be further more complicated because you just don't have that supportive circle around you to be able to feel that confidence that you really can get from knowing that having a disability is an amazing thing and it's an incredible thing. But I think in order to feel disability pride, you need to have compassion for yourself. You need to have a lot of understanding of the amazing things you can do with your disability. The great thing about the disability community is that you don't even have to have the same disability as somebody else. You just share the fact that the world is so bloody hard and we all wish the world was in a different way because of how inaccessible it is and how exclusive it is. So yeah, that's the great thing about the disability community. And also how about how you can find your disability pride because you can really just, you know, share that initial like feeling of the world really sucks.
Peta [00:24:16] One place where I don't think the world sucks is in Royal Lane in Melbourne, where Larissa McFarlane's mural has been created. Her Disability Pride mural. As you've illustrated, disability pride is complicated but also really important. How do you feel about the fact that the disability community will now have somewhere to gather and feel proud about who they are?
Isabella [00:24:43] I think it's really important and really wonderful that there's this place that we can all come to together and recognise, understand, pay respect to the previous advocates and leaders who have paved the path to create such an improved, accessible and inclusive world for us. It's so empowering for as a young advocate like myself, to be able to say just the diversity of, you know, the ways that we can express our disability pride as a person with disabilities. We have different ways of communicating and sharing our our ideas with the world. And this mural really shows that you can feel disability, pride and presented in any way that makes you feel really comfortable.
Peta [00:25:35] Thank you for listening to this week's episode. I hope enjoyed it if you did. Can I encourage you to leave a rating and review wherever you've listened to this podcast? It all helps more people find the podcast. You can always get in touch with me by my Instagram. My handle is @petahooke Peta Hooke or you can send me an email. My email address is email@example.com. Thank you again for listening. Happy International Day for people with Disability. And until next week. Have a good one guys bye.