Passion, Politics and Pigs! ... with Sophie Cusworth

Speaker 1 00:00

Access Granted is a production for Powerd Media.

Speaker 2 00:11

Welcome to Access Granted, a podcast for anyone seeking inclusion when it comes to living with disability. I'm Emma Myers, and in this edition I'm in conversation with a remarkable women's advocate whose passion goes beyond achieving access for all. 

Speaker 3

We don't really have the human rights framework within our domestic laws and I think people are really shocked to find out that for sterilisation is still lawful and that it's still happening. It's additionally terrifying that we don't have this as part of our conversation.

Speaker 2

She's Sophie Cusworth, a bubbly young woman passionate about gender equality and disability rights... and the acting CEO of Women with Disabilities Australia. Access Granted is where the personal and the political collide. It's curious conversations between people living with disability, hearing about advocacy, the push for change and discussing ideas for a more accessible world.

Speaker 1 01:23

You're listening to Access Granted with Emma Myers.

Speaker 2 01:27

I don't want it to be too serious. So Sophie, I want to start by asking you for an amusing moment from your childhood. 

Speaker 3

Funny story about me when I was a kid, one of my special interests as a child was pigs. And I now have a pig tattoo to honour that special interest. But I had a pet pig when I was a kid and I was actually on the show, Creature Features. And there's this scene of me sitting in front of a shelf and my shelf was just packed full of ceramic pigs. And then I had all of my soft toy pigs just placed all over my body. So like on my shoulders, on my head. And there's this clip of me just saying, I just really love pigs. The special interest, it runs deep. It's still there, still love pigs. 

Speaker 2

I'll start off with kind of a weird one. And I don't mean to sound like a psychologist, but tell me a bit about your childhood. 

Speaker 3

[LAUGHS] Look, I've certainly been asked that question before in a psychology setting. So I grew up in regional Victoria. I'm from Victoria, live in Melbourne now, but I grew up in Geelong first and then in Shepparton. So more of a country area. And I grew up an undiagnosed autistic child with undiagnosed ADHD. And I think that has really shaped a lot of my story and why I've kind of ended up where I've ended up. But I was chronically shy, really, really shy... which is probably surprising now that I do a lot of public speaking and public advocacy work. And I actually became an actor during my teen years. 

So it's... kind of strange to think of me being so shy when I was a kid, but I would speak in whispers. I was incredibly anxious, but the minute that I put on a costume or a mask or face paint, I was just full of confidence and really vibrant. So my parents sort of realised at a really early age that I was an incredibly anxious child, but that I also loved to perform... Yeah, and I mentioned I love pigs. That was a big part of my childhood growing up in a farm area. We had a whole bunch of animals learning to horse ride, having a pet pig, having chickens, ducks, goats, lizards, everything else you can think of. Yeah. 

Speaker 2

So you mentioned you were an actor as a teenager.

Speaker 3 04:03

Yes. 

Speaker 2

What sort of programs were you on? And how did you go from one to be an actor to one to study law? 

Speaker 3

Yeah, it's a bit of a jump. So I started in school musicals. I think I did my first school musical when I was maybe seven. And maybe it was a little bit later, nine. But I remember it was such a big deal, because my family was actually moving from Geelong to Shepparton around the same time as I was doing my first musical. And I'm pretty sure we held off moving so that I could complete the musical before we moved. So, yeah, I started in school musicals, loved them, was doing multiple musicals a year, and then joined a theatre company in Shepparton.

And I found Shepparton a pretty lonely space for me. There's a lot of community built around sport in regional Victoria. Well, there was at the time, and I'm not very coordinated. I'm not good at sports. I think I really found my place in theatre and in the local theatre company for kids and youth. So I was really enjoying that work or that hobby. And then I decided to do it in a professional setting. So I got myself an agent, which was incredibly exciting. And my parents were really supportive, driving me to Melbourne all the time to meet with agencies and go to auditions, and slowly started to get into the industry and got a few roles in community television.

And then one role on an ABC show called It's a Date, which was a comedy show and had a very small bit part in an Ethan Hawke film, which was very exciting as well. I got to do stunt training for it. And fun fact, I broke my shoe during the stunt training, so obviously took it incredibly seriously.

Speaker 2 06:03

But then how did I move to law? 

Speaker 3

I really wanted to do something that felt really challenging and fulfilling and that had an advocacy component. And at the same time, I think I have a really interest driven personality and I feel that I can find an interest in many different things, which means it can be hard to sort of really settle on something. But I was really motivated by social justice and by what I felt was right and ethical and really saw myself becoming a lawyer and an advocate and particularly working in the human rights space because of that.

Speaker 2 06:43

And you've spent close to a decade advocating for women's rights. So why? What gender rights in particular? 

Speaker 3

Yeah, I think gender based discrimination and gender based violence and gender inequality have been things that I've really profoundly felt in my life. I've experienced a lot of sexual harassment and gender based harassment, beginning when I was a kid. So I can remember the first time that I made, sorry, we're getting really serious now, but the first time that I made a police report actually about male violence or about a man following me and engaging in sexual activities. And I was a kid, it was terrifying. 

And so I really felt the profound impact of gender based violence and violence against women from an early age and had these really persistent experiences of public sexual harassment and then workplace sexual harassment that really motivated my passion for gender equality and the prevention of violence and understanding of consent and respectful relationships. Like many other neurodivergent teenagers, I also had a strong attachment with some of my teachers at school. And I remember my English teacher had such an influence on me. And I think of her incredibly fondly and she introduced me to feminism and feminist theory. And that really sparked a passion and interest for me. 

And then I went to university thinking I'd probably study literature or something like that in my undergrad, but found myself in gender studies. And then that was it. That was like the start of this growing passion that I thought I really need to dedicate my academic and professional career to this. Oh man, I love gender studies so much. I actually did gender studies in the English literature. I did a paper on gender studies and feminism in Jane Eyre. So good. Yes, I love that, that crossover. Yeah. And I think that's the thing with gender studies is it's... a multi, multidisciplinary area.

And so understanding the intersections with, you know, feminist theory and gender and literature, and then law really stood out to me. 

Speaker 2

And I guess regarding your diagnosis, you told me earlier in the week that you were kind of a late diagnosis for a few different things. Describe how you felt when you first heard your diagnosis. 

Speaker 3

Yeah, so I was diagnosed with autism and ADHD at I think 27, which was only a few years ago. And in some ways it was a really sort of transformative and revolutionary learning about myself. It's a total reframe on myself and my strengths and the challenges I've experienced and, you know, my childhood. But on the other hand, it also just made sense of my whole life. So it's this, this real dual experience where it was, it was new and I had to process this change. But on the other hand, I was like, wow, my entire medical history and all of my experiences growing up really just makes sense now. 

And I think that was the impression my family had as well that they were not surprised. They'd actually raised the potential that I could be autistic with my teachers and my doctors when I was a kid. And the response had been, Oh, you know, she doesn't present in the way that we think autistic people present. She's probably not autistic, which is obviously it's got a really gendered component there as well. Yeah. 

Speaker 2

Were you always aware that something was a bit different about the way you did things? And I guess when you received your diagnosis, everything must have just been like, Ah, finally it makes complete sense.

Speaker 3 11:05

Yeah, absolutely. I think I always felt... really different. And I... think about this a lot, that I would love to go back and find the journals and diaries that I wrote when I was a kid, to just sort of see how was I seeing the world and how was I processing the ways in which I felt different. But I would often describe that I felt like I could see everyone around me, but I couldn't reach them. I just felt like I was behind a bit of a barrier or behind a window pane and having the autism diagnosis and understanding the ways in which I see relationships differently or I socialise differently or I experience empathy and connection differently really sort of made sense of that.

So it was definitely a... Oh Yeah kind of moment. And I think it's that's been a continuous process because you kind of your process, the information you have at the time when you get diagnosed, but you continue reflecting on it. And I'll often still years later have memories pop up where I go, oh, yeah, that was because I was autistic and and I was undiagnosed and I didn't have my needs met there. And so it's just really sort of evolving process, but a process almost of like relief and self affirmation as well, a real sense of self compassion.

Speaker 2 12:39

As a professional communicator, that must have felt hard hiding behind this shade almost, like, does it still impact the way that you work and the way that you get your messages across? 

Speaker 3 12:52

Yeah, I think absolutely. I think there are multiple impacts. I'm a real internaliser, so I can go out and I can do the thing and I'll just experience a really significant toll, basically. So I think about it as like this, this process where you kind of calculate your energy, it's almost like a maths equation where I'm thinking, Okay, well, I need to do this particular thing, you know, go and speak at an event or go and have a meeting with someone and here's what I need to do to prepare. And then here's what I need to do to recover. So it's this sort of calculation of energy and I guess the cost of masking, really. 

And I think the other way that it really impacts me is that I feel more comfortable potentially talking to a crowd or talking to a group about a policy issue or something kind of academic or intellectual or something, than I do navigating a day-to-day social interaction. I was saying this to some people the other day because I was a bridesmaid over the weekend for a friend's wedding and I was giving a speech and we're all sort of talking about how we all felt with public speaking. And I was like, You know what, I'm more comfortable giving this speech to a crowd than I am just in a one-on-one conversation at the social event. 

Speaker 2

And how are you feeling right now? 

Speaker 3 14:24

I feel pretty good. How about you? 

Speaker 2

I feel good. It's just like having a conversation with a friend. 

Speaker 3

I, yes, agree.

Speaker 1 14:33

You're listening to Access Granted with Emma Myers.

Speaker 2 14:43

Back to diagnosis, you mentioned that you also live with chronic pelvic pain, and we talked a little bit about that and I guess your ability to have children. 

Speaker 3

Yeah, absolutely. So I have a whole range of chronic pelvic pain conditions, and I think I probably had symptoms at a young-ish age as an early teen, particularly around my first menstrual cycle, but it wasn't until my 20s that I was diagnosed with these conditions and that's really consistent with the research that basically says for some of these conditions like endometriosis, there's an onset of symptoms and then diagnosis takes something like seven to eight years after that onset of symptoms. But yeah, I have endometriosis, I have adenomyosis which is kind of similar but within the uterus wall, and then I have vulvodynia and vaginismus which are chronic vulvial pain conditions related to the nerves and the muscles.

And things like endometriosis and adenomyosis can impact fertility. I don't have a clear answer at this stage around whether I can or can't conceive but I know that it can cause some complications and can result in infertility. So it's been a really challenging experience. I mean, my chronic pain really started when I was in law school and it was really significant. My medical records listed as an extreme case and I just spent so much time and so much money pursuing therapies, procedures, medications for years and it impacted my mental health, my ability to participate in the community and education.

I wrote my thesis for law school lying down in bed. I did so much from bed. I couldn't walk or sit or wear clothes without pain. So it really just had such a profound impact on my life for such a long time and it's not really something that I could be cured from but it's something that is managed a lot better these days.

Speaker 2 17:27

Can I just say I completely empathise with you right now, because I wrote my thesis from my bed as well - and I understand completely, because I have chronic pain. So being that you have experience with chronic pain in a very feminine way, can you share how you felt when you first heard the term "forced sterilisation"?

Speaker 3 18:01

Yeah, absolutely. So I think I first heard about forced sterilisation as a practice that is still lawful when I was in law school, and it's really horrifying because it's such a horrific practice that has been recognised by United Nations treaty monitoring bodies as a form of torture and a form of gender-based violence. But when I was in law school, you're in an environment that sees the law as benevolent and as protecting people's best interests and protecting against harm - and realistically that's just not the case for many of our experiences as women with disabilities of the law.

And so I think that framing from a legal context is very different to the framing from a human rights context unfortunately, because you know we don't really have the human rights framework within our domestic laws in the ways that I'd like to see it. And I think people are really shocked to find out that forced sterilization is still lawful and that it's still happening. I think it's pretty terrifying and I think it's additionally terrifying that we don't have this as part of our conversation and a shared knowledge that this is happening.

Speaker 2 19:34

But how do you as an individual, you know, how did you wrap your head around this kind of practice - as someone who you know has intellectual capacity to know right from wrong and what you want to do with your own body? How did you wrap your mind around the fact that this can happen to people in this day and age - as someone with a disability, rather than, you know, a human rights professional? 

Speaker 3

Yeah so I don't know that I have wrapped my head around it. I think it's so sort of incomprehensible - and I think from a personal perspective I've almost felt the opposite problem I guess, or although... opposite treatment - where you know, adenomyosis means that there is effectively disease in my uterus, right? And I would like to have the option of considering hysterectomy if I felt that that was necessary, if I felt that that was right for me, but I have doctors who are very very keen to preserve my fertility because they see me as you know, capable of bearing and raising children - and for many women with disabilities they they receive the complete opposite assumption, which is horrific. 

And we have I guess this shared experience of a removal of choice and control and denial of sexual and reproductive autonomy - but I guess from a personal perspective, because I am keen to to self advocate, and people do listen when I do that, there's a privilege there as well - whereas for many people, you know, who are the most marginalised in the disability community there is no conversation, there is no support for making a decision. There is a sheer and and violent assumption that a person shouldn't have children or won't want to or won't be capable of having children, or you know, it's... convenient to not think about it, or something like that. 

So it's really hard to wrap your head around - and I think being in the feminist movement personally around sexual and reproductive rights has its challenges as well, right? Because in many ways there's been such progress in the feminist movement that has left our community behind or hasn't impacted our community in the same way... and so we talk, you know, a lot about seeing sexual and reproductive rights regressing around access to abortion etcetera... and it's sort of like, well things haven't gone backwards for many women with disabilities because so many people are denied their sexual and reproductive rights every day - so it hasn't had the chance to go backwards because it we never made the progress. 

Yeah so I guess it's it's incredibly challenging on a personal level as well, to just wrap your head around... this denial of choice and control in your sexual and reproductive health care... in the many ways that it manifests for us.

Speaker 2

Thank you so much Sophie, I hope I haven't pushed you too far.

Speaker 3

Absolutely not. 

Speaker 2

This is... what is the most rewarding element of your, I guess overall journey of advocating for women with disability?

Speaker 3

Oh, that's a great question... I think the the ability to impact change... at a policy level is just incredibly rewarding, I think it's different to the way that I felt change as a practicing lawyer... I was obviously working with existing legal frameworks, I was working on particular cases for particular clients, but in the context of systemic advocacy you're really able to speak to the systemic level, you know, and... really hopefully impacts change for a wide cohort.

And I think even thinking about the the previous question around my own experiences of sexual and reproductive rights and health care, to me the fact that I have a different experience of... denial of those rights to other women with disabilities feels like I have a responsibility to advocate for our community and the various ways in which our rights are denied. And so I see that as a really rewarding element of this work as well, is lifting up other people's voices. 

I work at a member-based organisation, and so the ability to go into a public forum or a government meeting and to say, This is what our community is talking about. These are the various concerns around our community, amidst our community, is really rewarding. And I think being able to see changes, although sometimes it's tricky to measure impact and to see immediate change in the context of systemic advocacy. When you do see those changes, it's incredibly exciting. 

Speaker 2

What does the future look like for you, do you ever see yourself going into politics? Do you ever see yourself stepping into Parliament House?

Speaker 3 25:42

Yeah, I've thought about it. I don't know what the future looks like for me at the moment, but it's definitely something I've thought about. And I remember when Julia Gillard was announced as the first female Prime Minister, apparently as a teenager, my response, my very first response was, Oh, but I wanted to be the first female prime minister of Australia. Look, that was very aspirational for a, I don't know, 14-year-old or however old I was then, but it's definitely a possibility. I don't know, I think I'm grappling with working from within the system versus working from outside of the system. But I'm really open to it and keen to see what the future holds. 

Speaker 2

Our podcast is called Access Granted. What would Access Granted look like for you? 

Speaker 3

I think it's flexibility and it's genuine engagement with where I'm at and what I need on the day. With my chronic pain, it's fluctuating. Some days I'm in a lot of pain, some days I'm not. And with my experience of being autistic and ADHD, there are times that I really struggle with certain things and there are times that I thrive doing the same things. Like a sensory environment, it might be absolutely horrific to hear a certain noise or one day when I'm really stressed, but another day I might want to go to a club and listen to really loud music. And so access being granted is that genuine engagement with where I'm at and allowing me to express what I need in that time and that real flexibility to meet those episodic or fluctuating presentations and needs.

Speaker 1 27:54

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Speaker 2 28:06

And you can find the next edition when it comes out next week, wherever you download your podcasts.