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Liel K. Bridgford
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
5th December 2022: S2, Final Episode with Carly Findlay
[Theme music]
Liel (L): Shalom everybody. I’m Liel K Bridgford and this is (Un)marginalised. Before we begin, please note that the following episode contains discussions about ableism, sexism and sexual violence, so please take care as you listen and check out our show notes for support options. This episode was created from the launch event of the (Un)marginalised season 2 that I produced and hosted in October 2022, as apart of Melbourne Fringe Festival. This was my first time recording live with an audience, and I loved experiencing people’s responses and reactions to the content. The episode is an edited version of the event, and includes the story behind the podcast, a live interview with Carly Findlay and an audience Q&A.
[Theme music fades out].
L: Alright, let’s jump in.
[Theme music. It fades out after 17 seconds].
L: Shalom everybody. I’m Liel K Bridgford and this is (Un)marginalised. Before we begin, I want to acknowledge the traditional owners of the land on which we are meeting today, the Wurundjeri people of the Kulin Nation, and pay my respect to their elders, past, present, and emerging. Some housekeeping business before we begin. I’m a white looking person in my early thirties, with uh, brown shoulder length hair that’s pulled back at the moment, and I am wearing a very colourful jacket, a golden top and a burgundy dress, and very colourful earrings as well. The last, final thing to get out of the way is my name. Yup. So my name is Liel, and many of you Aussies, if you identify as an Aussie, really struggle to grasp how to say it, and look it’s not your fault. My mum, who is actually here tonight from overseas, thanks for coming.
[Woo in the crowd].
L: Um, she never thought I’d be living here, so she didn’t bother to check with you how you might pronounce it. [Crowd laughs]. And so, I really wanna help you, so we’re gonna do this one time. I’m gonna say my name again and then we’re going to say it together, okay? [Crowd laughs]. Ready? My name is Lee-él. And now you. [Liel and crowd says it together]. Good job, that’s it. [Crowd laughs]. So when you’re going to tell all of your friends about the podcast after tonight, just practice saying it over and over. [Crowd laughs]. Okay? Great. And if you don’t know who I am, my name is Liel K Bridgford, I’m a writer, poet, podcaster and a disability and justice advocate. By day, I also practice as a Provisional Psychologist, and a trainer. Uh, that’s a mouthful, and I identify as a proud disabled person, an immigrant, and a non-conforming female. [clicking in the audience] And now, let me tell you about the story behind the Unmarginalised podcast.
L: In one of the most locked down cities in the world, you had to do something different to survive. Your previous coping tools were probably unavailable, now locked away by the virus and our government’s response to it. You got up each morning and wondered how you were going to get through the day. The hours stretched beyond comprehension, you never knew time could change like that. We all did something, anything, to get by, to pretend like we weren’t aching for our families abroad, or across town, to numb the terror of the unknown or the grief for the life lost at once. You may have chosen a liquor, or scrolling, or walking in circles of 5kms, of course. [Crowd laughs]. Um, I chose podcasts. It was a form I didn’t really know before. I mean people would talk about podcasts and I couldn’t understand the buzz, it was just a bunch of people talking, right? Wrong. Lockdown taught me to love this form, even though I thought I couldn’t take on information from just verbal communication. I’m that person in lectures that writes every single word the lecturer says, you know the one at the front that doesn’t talk to anyone? [Crowd laughs]. That’s me. Um, but not when listening to engaging podcasts about things I’m passionate about. I found the two topics I am most fascinated by, explored deeply and in accessible language and format, heavenly. I listened to every episode I could find on feminist storytelling, cultural criticism, as well as some disability-led shows. It was a learning experience at a time I thought learning was impossible. After a while though, a niggling feeling of dissatisfaction sprouted in my stomach. With each new episode I started noticing how a very successful disability show wasn’t touching on many topics that are integral to my disability experience. Things like consent, gender, Instagrammable ableist parenting expectations were being totally ignored. It struck me how a lot of the guests on these shows were quite privileged people which skewed, again, the content of these shows. The hosts of these shows, it felt to me, like they were broadcasting from another planet, one in which things were easy to dissect and solve. One in which they belonged. After a while, I couldn’t listen anymore. I wanted to listen to stories of people who were dealing with similar problems to mine. At the time, I was a disabled person — still — dealing with workplace discrimination, access to childcare barriers, isolation from family and from health supports. The emotional and physical pains that I was going through which I knew weren’t unique, were being totally ignored in the popular storytelling scene. This lack of representation is so common, and as many marginalised folks would know, it has a way of making you feel powerless and isolated. Because if I don’t belong in the feminist world, or the disability world, where could possibly be my place? I decided to do something about that, um, and the idea for the podcast started brewing. A few weeks later, I resigned from my job then, in the mental health field, and ah, on my first free day I met up with a friend who I told about my idea, Matt McCleish, and we workshopped some details over a coffee in the summer of 2020. It was a break between lockdowns, I swear [Crowd laughs], and we decided on things like the name, (Un)marginalised, and the format and the host, yours truly.
L: I was terrified of what other people are going to think. But also, pretty proud that I jumped straight into a new creative form, a form that allowed me to share stories of other marginalised people. My guests and I delved deep into the complex reality of belonging to multiple marginalised communities. In April 2021, we released the season and received such heart-warming feedback. Thank you [Crowd applauds]. Ending the season was a disappointment. I wanted to keep going but I couldn’t without some financial support to pay for things like podcast hosting subscription and recording programs. Who knew you had to pay money for that? [Crowd laughs]. Not me, but sharing the stories of other marginalised people has become an important passion for me. The mission of the podcast is to create spaces where multiply marginalised people can be ourselves, share our stories and connect, because there is no greater factor in healing, as well as individual and social change than connection. With that mission in mind, I braved a few grants applications, and I’m so humbled and proud to announce that the second season of the (Un)marginalised podcast and this launch event tonight have been produced thanks to the support of the City of Melbourne Arts Grants. [Crowd clicks]. Thank you.
L: For the next part of the night, I’m so honoured and humbled to introduce my guest, Carly Findlay. Carly works as Melbourne Fringe Access Advisor. She works to educate artists, venues, and the wider arts sector in creating accessible shows and builds and maintains close relationships with Deaf and Disabled artists. Outside of Fringe, Carly is an award-winning writer, speaker, and appearance activist. Her first book, a memoir called Say Hello, was released in January 2019. Carly edited the anthology Growing up Disabled in Australia with Black Inc books. She writes on disability and appearance diversity issues for news outlets, including the ABC, The Age, Sydney Morning Herald, SBS, CNN and Vogue. I know. [Crowd laughs]. In 2020, Carly received, oh, my Zoom, Carly received the medal of the Order of Australia for her work as a disability advocate and activist. She’s a new roller-skater, a lifelong Darren Hayes fan and has never met a cheese she didn’t like [Crowd laughs]. It’s critical. Please help me welcome Carly Findlay. [Crowd applauds]. Carly. Hopefully she can hear us from backstage. Welcome Carly.
Carly (C): Thank you for having me.
L: thank you for being here tonight.
C: Thank you.
L: Your bio mentions a little bit, and people might know, but can you tell us what intersections of identity do you navigate, for people who may not know?
C: Um, well, firstly I want to absolutely recognise my privilege, um, and also acknowledge that we’re here, on, you’ve, I know you’ve already done it, but
L: Yes
C: I’ve arrived on, um, uh, unceded Aboriginal land. We’re on Wurundjeri Woiwurrong Country, I believe here.
L: Okay
C: And pay my respects to Aboriginal Elders past and present, and extend my friendship to Aboriginal people who are in the room or watching the livestream or listening to the podcast. So thank you. Um, I intersect a number of identities. Um, I am a woman, I identify as disabled and I hadn’t, or, like I hadn’t always even though I have had a skin condition uh, and experiencing disabling things all through my life, I didn’t always recognise that. And I am a woman of colour, but that is also very hard to tell, I get a lot of assumptions that I am white. My mum is a coloured South African, that is her way of describing herself. I know that’s not the most politically correct term now, but she used that when she was in South Africa, and now, and she had to come to Australia to marry my dad, that’s where I intersect.
L: Yeah
C: I also grew up in the Country, does that, is that a marginalisation? [Crowd and Carly laugh. Someone yells yes]. Yeah
L: So can you give us an example of
C: Mmhmm
L: what, I guess belonging to all these communities for you, a time where you faced barriers because of
C: Mmmmm
L: belonging to all these marginalised groups?
C: Recen— most recently, I, I think I became comfortable as a disabled person, disabled woman and so I got okay with managing that part of my identity, cause for so long I was just, um, you know, trying to manage a lot of ableism and I guess shame, and tried to find pride within myself. And it’s quite hard to find pride when you don’t see yourself represented and don’t, umm, you know, aren’t respected I guess my strangers in society, you know, with ableism thrown at us. Ableism is discrimination towards disabled people. Um, and so yeah, for a long time I didn’t really see myself, um as a person of colour and I never really understood that, or or made time for that maybe.
L: Mmmm
C: And it was only when I got comfortable with that disabled identity and then other people started calling me that and I felt like I didn’t, I couldn’t, I felt like I couldn’t take up space because I wasn’t
L: Mmmh
C: I wasn’t Black enough. And I know for many people with ichthyosis, I’m not speaking for everyone but I haven’t met many people with ichthyosis who are as comfortable in their skin as I am.
L: Mmmhmm
C: And you know, and that that might be where they airbrush their photos, or you know, use filters on their photos, or deny that they’re red, or deny that they’ve experiencing disabling barriers.
L: Yeah
C: Or deny that they look like someone else with ichthyosis because someone with
L: Mmmhm
C: ichthyosis, the skin condition I have, is more likely to look like another person with ichthyosis than they are, their sibling, that’s how the genetics work.
L: Mmmmhm
C: You know I’ve met lots of people around the world that look like me, and it’s pretty amazing, but also getting mistaken for kids, you know.
L: Oohhh
C: You know, I remember being at a party on the Gold Coast, but this drunk person came up to me, and is like oh my god, I saw you, I saw you on, in Brisbane, you know three weeks ago, or something. And I said, oh no I’m I’m from Melbourne, and they were insistent, absolutely insistent.
L: Yeah
C: And they’re like yeah yeah you were at this thing, and oh no no, wait, how old are you? [Carly laughs]. And you know, I must’ve been in my mid thirties then and I said, you know that — oh no no I think this person was only 11. [Crowd and Liel laughs]. I get a lot of lateral violence in the disability community and a few, a couple of years ago, when Black Lives Matter, um, got more prominence, particularly in Australia, I had written a piece about how I want to speak about rasial—racial stuff more, but sometimes I don’t get believed because people see redness, not race, I guess.
L: Mmmm
C: And I wrote this piece, I’m Not White, and part of the lateral violence that I experienced within the disability community was, um, yeah, that, you know, that I’m faking my race, and my disability.
L: Mmh. You know, you’ve already answered part of it,
C: Yep
L: my next question, which is going to be, when belonging to all these communities, actually facilitate joy or connection,
C: Ahhh
L: Or meaning for you
C: That’s good.
L: Which I mean you’ve touched on it.
C: She might not know this but one of my personal mentors is Namila Benson, who works on the ABC and [Crowd clicking], [Carly laughs]. I can hear some clicking. Um, Namila works in artworks, and she was the, um, host of, ah ABC RN’s arts program, um, she’s a broadcaster like on community radio and she’s had me in to train, and I met her on the train once, like she used to follow my blog years ago, and I knew her, um, I knew her cousin. And we met on the train, and you know, we’ve been in-real-life friends since you know then, ten years ago. And just the relatability, I feel like with being it, with another person of colour, woman of colour is just amazing and just look to her so much, and just that.
L: Yeah
C: Yeah, she’s really helped me and even just being, um, yeah, even just being around other people of colour, First Nations people, that has helped me. But also in the disability community, that’s been amazing as well, you know, lots, I can see some people here that I know tonight, you know fri—disabled friends, which is really exciting, so yeah
L: Yeah
C: it’s been, you know, and then so many opportunities as well, like –
L: You kind of talk about the lateral violence
C: Mmhm
L: As well as the meaning and connection and so many of my guests over the last couple of seasons, talk about belonging to multiple communities can be so hard with a sense of inclusion.
C: Yeah
L: I’m wondering for you, what does help you feel that you belong somewhere?
C: Yeah, that’s a good thing. I think people just getting it. Ahh, but also I think sometimes there’s a danger of not, not seeing colour, or not seeing race, or not seeing disability,
L: Mmm
C: And then there’s a danger of like not creating any kind of inclusion,
L: Mmm
C: So for example, I went overseas and I stayed with a family who should’ve known me, and they didn’t prepare their children, and so I was like [Carly laughs in disbelief], I was overseas, you know, for the first time, which was great, but the children wouldn’t look at me, wouldn’t speak to me, were hiding behind their parents legs. And when I was saying to them, oh do you want me to talk to them why I look the way I do, they were like oh no no, it’s fine, it’s fine, and that was really hard,
L: Yeah
C: so preparing people
L: Mmmm
C: And I think one of the things is, especially when, if you’ve got children, I’m not saying set your kid up with an Instagram account, I’m saying when you’re on social media, scroll through and show them different people. Prepare them for that,
L: Mmmmm
C: because I can tell you Namila’s kids, you know, other people’s kids, they’re amazing because they’ve seen me online, and there’s no
L: Yeah
C: You know.
L: And what you said about people actually getting it, I think it’s very hard for people to get it. But I think what’s helped for me at least, feel a sense of belonging is when people actually drop their assumptions and just bring a sense of curiosity and acceptance.
C: Yep
L: Of the way people looking different, or doing things different or walking different, or whatever it is, um, because we have so many assumptions and then when we don’t meet them, then we get excluded,
C: Mmmm
L: but when I think, and it’s so hopeful, I think all of us can actually learn to do that.
C: Mmmhmm
L: And it comes to your point of preparing people and diversifying your feed
C: Yeah
L: We can all learn to
C: Mmmh
L: become curious and be accepting
C: Mmmh
L: And that can create change within ourselves and within our communities as well.
C: I think curiosity though can be tricky,
L: Mmmh
C: because people [Carly laughs], I don’t know, if I’ve met them and then, and then they’re being curious about something
L: Yes
C: for the whole time I’ve been with them, and then they suddenly launch into
L: Yeah
C: And we shouldn’t have to
L: I think there’s a difference between curiosity and nosiness
C: Yes [Carly laughs]
L: Like you can be curious about how people live their life and be interested, but not be nosy and ask inappropriate questions [Liel laughs]
C: Yeah. You can have this really normal interaction with someone, and then you realise that they’re thinking about something ridiculously ableist while
L: Yeah
C: Or racist while you’re sitting there. That’s a really weird thing as well you know, how
L: Yeah, absolutely.
C: It’s like they haven’t been focusing on you, in a respectful way, they’ve just been wanting to launch into that.
L: Mmmh. And I think it will be, it is more common for disabled women [Carly laughs] and disabled gender non-conforming people.
C: Yes
L: Um, which actually brings me to my next question.
C: Mmhmm?
L: I think there’s so much work right now, disability advocacy, and feminism
C: Mmhmm
L: And there’s anti-racism work. But to me, it feels like they’re kind of don’t often overlap enough.
C: Mhmmm
L: What do you think about
C: Well most—
L: Integrating them?
C: I think firstly we have to make all of them accessible for disabled peoples.
L: Yeah
C: So all of the workshops, or whatever you’re holding, are accessible for all the people, because disabled people make up 20% of the population and chances are they’re going to be in your marginalised community, you know
L: Yeah
C: If you’re in the LGBTIQA community, or the, um, People of Colour community, First Nations community, etc,
L: Yeah
C: They’re gonna, there’s gonna be disabled people, so make it, make your stuff accessible.
L: Yeah, you know, absolutely
C: Yeah and inclusiv—and you know, have, ensure that you invite people on your things
L: Mmmh
C: From a disability perspective, but from all kinds, you know.
L: Yes
C: An intersection.
L: And I guess some people in the audience tonight might be wondering, well why do we need to integrate those things, I mean it is different, disability advocacy and feminism, they’re not the same thing. I think it is important to highlight that, those works are not as affective when they’re separate, and one issue that really exemplifies that is sexual violence.
C: Mmmhm
L: Because most of you tonight would know that girls and women are more likely to ex—and gender non-binary people — are more likely to experience sexual violence than men and boys. But do you know that disabled girls and women and non-binary people are even more likely to experience sexual violence? So, so many of us experience that, and I mean, it happened to me several times, and my sex, my gender, and my disability have always been essential to that experience. And one example, which I’m not going to go into any details about, but I was sexually assaulted by a doctor, who was examining me for my disability. [Crowd reacts], so if I wasn’t disabled, I wouldn’t have been in that room. And mainstream feminism does not address this issue.
C: Mmhmm
L: And disability advocacy by itself doesn’t often address this issue either.
C: Mmmhm
L: We have to, there’s a power imbalance. And we have to shift the power imbalance.
C: Mmmhm
L: And I’m not saying I have an answer to it, but I think we definitely have to centre the lived experienced of multiply marginalised people in these works.
C: Mhmm
L: So feminism has to include disabled people [Crowd clicks]. And disability advocacy has to include diverse disabled people, you know it has to include [Carly laughs], diverse genders, diverse cultures of people
C: Yeah
L: In order to be actually effective and address these problems, and I think we should integrate them as we do on the (Un)marginalised podcast.
C: Yeah absolutely, and I mean I think that when you have disability, sorry, when you have a Women’s Day event that the disabled person is a disabled man, speaking, that’s not good enough.
L: Because when people think of disability
C: You know I just said
L: Like inclusion of a ramp, I mean great, a ramp is great, I love a ramp [Crowd and Carly laughs], but it’s not enough
C: It’s not enough.
L: Okay?
C: It’s not enough. It’s not great, it’s not great on roller-skates, yeah.
L: My final question to you Carly
C: Yeah, uh-huh
L: tonight, which I like to ask all of my guests on the show
C: Okay
L: What does intersectionality mean to you?
C: Mmmh. I think it means, recognising that we have mar—like many facets of, that make us up, and that it is, you know that thing where “she doesn’t let her disability define her” [Liel and crowd laughs], um, like let youR thing define you, it’s okay, you don’t have to hide it away, you know
L: Mmmhm
C: [Crowd and Liel clicks] You don’t have to ignore it and pretend like it’s not there, so you know, let that, but also like find, find pride
L: Yeah
C: I’ve been thinking a lot about this like, I saw a really great event that Caroline Bowditch, who’s CEO of Arts Access Victoria, um, spoke at the other day, cal—a Meeting Place event, and she said that she really wants to see disabled people in leadership positions because, in, like in disability related, but in all leadership positions, but particularly when they’re disability related, and the disabled person needs to be out and proud.
L: Yes
C: Like, I want to see this. I want to see, um, you know, out, out-ness, I guess.
L: Yeah
C: And, um, out, of, of other marginalisation as well
L: Yeah
C: I think that that is important. So obviously safe spaces need to be created.
L: Yep
C: We’re stronger together. That’s what intersectionality means to me.
L: Ahh, yah. Beautiful.
C: And that, you know, we we look at all facets
L: Yeah
C: And you know for for allies, see colour, see disability, see race, gender, sexuality.
L: Thank you Carly.
C: Great, thank you.
L: For me, I think intersecti—intersectionality is very similar to yours, in I guess people being able to be themselves, and I think creating spaces like these, and collaborating and being allowed to tell our stories and connect. Um, what I’ve learnt over the last couple of seasons is that we’re all so similar, in not, not in everything, but in our desire to be seen, in our desire to be loved for exactly who we are, with all of our identities, and we all want to live our best life, a meaningful, joyful life, and we can do that if we have adequate, equitable support and autonomy. [Crowd clicks].
C: Mmmhmm
L: Thank you Carly, and—
C: Thank you. Thank you for having me, that was very quick.
L: It felt very quick. But we do have some time for audience questions now.
Audience member 1 (AM1): I just wanted to ask about your outfit. Can we just, while people [Crowd and Liel and Carly laugh], have a moment to think about, you know, more deep questions, can we just celebrate um, the both of you as disabled fashion icons?
C: Do you wanna do a—
AM1: Can we have a bit of a walk because yeah? [Crowd cheers and laughs]. Yeah
L: Did I show you the side?
AM1: No you didn’t but you look fabulous and thank you for being visibly disabled and doing the work for you.
L: Thank you Carly, I’ve got some questions coming from people at home. “Such an incredible event Carly and Liel, what do you think when people say, I don’t see your disability?” Well I think we touched on that, but I think when you don’t see my disability you don’t see me. Um, you don’t see that I need a seat.
C: Yeah
L: I need a fucking seat, okay. [Crowd – yeah!]
C: Yes [Liel laughs]
L: Ah, so if you don’t see my disability, you don’t see my access needs,
C: Yeah
L: You don’t see my identity and my community
C: And also like there’s that shame thing, as well
L: Mhmmm
C: like if they, if they think disability so shameful, they’re like well we’re not going to see that side of you, because we don’t want you to feel ashamed.
L: Exactly. But we, I mean, um, both of us
C: Yeah
L: Here, are not ashamed
C: Mhmm
L: of we who are, we refuse to be ashamed. We have a, I think it’s a question for you, Carly. What advice do you have for dealing with trolls? I’ve started speaking out more [Carly scoffs], and while there’s a lot of support, there is a lot of horrible people out there.
C: Mhmm. Now I just block them. But I think that Twitter, Facebook, and Instagram have some really good features in that you can control what words pop up in your mentions.
L: Mmmm
C: So on my Instagram and Facebook I think, and and Twitter, I’ve like muted all of the R-word, M-words, S-words
L: Yeah
C: All of those words
L: If you don’t know, just Google [Liel laughs]
C: Yeah. I don’t — but don’t. But, yeah you should know them. I mean you shouldn’t use them.
L: Exactly. But you should know what we’re talking about when we’re talking about ableist slurs.
C: Yes, yeah. We don’t need to explain what the words are.
L: Yes
C: Um, so yeah I I do that but now I just block them. But also, you can control who sh—who responds to your Tweets.
L: Okay [Crowd laughs]. What’s one small step we can do every day to be more intersectional and acknowledge all of ourselves? So it sounds like it’s coming from someone who is also navigating intersectionality. I think I small step is kind of actually saying that to yourself and find people from your communities, ah, listen to the (Un)marginalised podcast if you haven’t listened already
C: Uh-huh
L: But I think really saying that to yourself and saying that’s okay, and be out and proud as Carly said, and like our intersectional identities are really good bullshit detectors, and so if you
C: Yes
L: kind of go to someone and go, I identify as whatever you identify as. If someone responds badly to that, you kind of know they’re not your people. Um, but you will see from people’s responses
C: Mmmmm
L: who are your people.
C: And also like, um, if you experience barriers, you are, you know, disabling barriers, then it is okay, to call yourself
L: Disabled
C: Disabled
L: Exactly.
C: Like if you’ve got a, you know, a an impairment or a diagnosis that hasn’t happened yet
L: Yeah
C: But you suspect that you might have it and you’re still experiencing these barriers, then it is okay.
L: Yeah, we have another question. Thank you Carly, another question.
C: Great
Audience Member 2 (AM2): Hi, um, recently I’ve experienced, um, sexism and ageism, and it was a woman with colour and then by another woman with colour. And then I was really questioning that, you know, I’d love love to support other women, but when you know, sometimes that discrimination can come from
C: Mhmmm
AM2: you know, people who are also in the same category, and you know, I’m sure even within disability sector, or wherever
C: Oh yeah
AM2: So how can I keep up with that, you know, without losing my hope? That we can still kind of stay together and be strong together, how you know? I just wanted to seek your advice.
L: Yeah. It’s really hard, I think that it’s okay to sometimes feel like things are really hard, and just acknowledging that it is hard, is a good step to then finding that hope. Um, not to try and kinda suppress it because it is real, and actually acknowledging it is real, the barriers that we face are real, and the discrimination we face is real. And again, I think find your people, don’t give up on finding your people, I think that’s probably, if you’re feeling like that a lot of the time, it probably means you haven’t found your people yet. And I’ve only found, you know, people that share a lot of my identities really recently, and I’m in my 30s. It took me a long time.
C: Mhmmm
L: Um, I think continuing to go to different places that you haven’t tried before that would kind of be my main advice, and that, yeah actually acknowledging that. I found a lot of people online, I don’t know, that’s obviously, there’s bad and good in there. Yeah, I don’t know Carly if you’ve got another tip.
C: Yeah I’d say that, and also what Liel said before, you know, listening to this podcast, finding
L: Yeah
C: other guests that have been on there, connecting with them.
L: We have another question from online. “What are both your hopes for the future in terms of disability inclusion?” I’ll just start with saying that I think it’s kind of what I was talking about before, I think my hope is that disability inclusion is not gonna just include disability
C: Mhmmm
L: it’s gonna be integrated with feminism, integrated with anti-xenophobia, integrated with anti-racism. It’s gonna be integrated, otherwise I don’t see those works as being as effective. Any other hopes from you?
C: Yeah, I I really hope that disabled people are paid meaningful money for
L: Yeah
C: meaningful work, um, you know, many disabled people are still living in an, you know, in group homes and working in sheltered workshops for $2 a day.
L: Thank you Carly. We have final question time.
C: There was someone here
L: Is anyone—was someone that wanted a question?
Audience Member 3 (AM3): Hi. Um, I had a question about people that have less visible um, disabilities, say mental health for example. I know people who, um, you know, if they were outwardly um, you know, sort of out about that, that it could cost them their jobs, or other really significant things because those ah, certain conditions are really stigmatised. What would you say to people who are in those situations, who want to advocate, who would like to be visible, but don’t want to further disadvantage themselves by being out and proud as you, as you mentioned before?
C: I think firstly to overcome that internalised ableism, starting by sharing like wi—, reading about wide disability issues I think is important, like knowing that your experience isn’t the only disability experience, so reading up widely cause disability is diverse. And also, um, not, not letting the visibly disabled people be the only ones to speak up. So for example, if you’re encountering some sort of ableism, you know, say if someone uses the M-word, right in the office? And then, say, I’m, you know, hey please don’t use that word. Maybe the invisibly disabled person could speak up for once and not let the visibly disabled person do that.
L: Mmmmh
C: But also know that I think that disclosing disability and access needs. You don’t have to disclose your disability to ask for access needs, by the way, you can say
L: Yeah
C: I need to come into work at 9.30 everyday and work til 5.30, for example, because those times help me better, or, you don’t have to talk about why you need to do that.
L: Yep
C: But also, um, you know, disclosing your, your disability, or talking about your access needs, I think that’s liberating, like you you don’t have to hide it anymore, it’s like oh my god I can breathe.
L: Exactly.
C: I don’t have to pretend I’m normal anymore. Normal in, you know [Liel laughs]. You can just be and it’s, and then you find your people. Yeah
L: Yeah. I think, um, it’s a great point as well, you can be a good ally and speak up, even if you don’t identify as disabled, or you don’t identify as someone who navigates intersectionality, you can speak up and say that’s not okay. Um, if you have more questions that we haven’t got to, go and find both of us, we have works available for everyone to read online. If you want transcripts of the episodes, more information and some more support options, all of that is available on my website, which is LKbridgford.com. The massive last thank you is to Carly Findlay for joining us tonight.
C: Thank you.
L: Um, Carly has donated her fee for participating to Face Equality International, which is going to be donated. [Crowd claps and clicks]. So thank you so much Carly, I really am so grateful for
C: No worries
L: You being here and all of your support.
C: I don’t usually do that, just to [Crowd laughs], let you know, if you wanna book me. Yes
L: Thank you everyone. We need to bump out before they kick us out. [Crowd laughs]
C: Thank you. Thank you so much.
L: Thank youuu
C: Byeee
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L: Before we go, a grateful thanks to the City of Melbourne Arts Grant 2022 for supporting this episode and the entire second season of the (Un)marginalised podcast. I would also like to respectively acknowledge the traditional owners of the land of which this episode was produced, the Boon Wurroung people of the Kulin Nation, and pay my respect to their elders past, present and emerging. Thanks for listening folks. A final note from me. This was the very last episode of season 2 of the (Un)marginalised podcast. We can only continue producing more episodes if we have enough listeners and financial means to do so. So, if you want to hear more, please support the show by heading to my Patreon on www.patreon.com/lielkbridgford. Starting from the price of a coffee per month, you will not only help make sure this works is going to continue to be available, but also receive exclusive behind the scenes content. Lastly, please share the podcast on your social media pages. It’s free, and all helps us with this work. Bye for now.
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20th November 2022: S2, E5 with Laura Pettenuzzo
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Liel (L): Shalom everybody. I’m Liel K Bridgford and this is (Un)marginalised. Before we jump in, please note that the following episode contains discussions about ableism, internalised ableism and mental health, so please take care as you listen and check out our show notes for support options. Today on the show I have Laura Pettenuzzo. Laura is a disabled writer, living on Wurundjeri Country, she has a master of professional psychology from Monash University and works with youth disability advocacy service, creating plain and easy English content. Her words have been published in various places, including Link Disability magazine, and The Age. Laura is also a newly appointed member of the Victorian Disability Advisory Council. Welcome Laura.
Laura (LP): Thank you.
L: Firstly I think congratulations are due for your appointment to the Victorian Disability Advisory Council, can you tell people that don’t know what this is. What is this structure, what is the role of it, but also more personally, what are you hoping to achieve by being a part of it?
LP: First of all, I am so honoured and excited to have been appointed, but yeah so essentially, the um, the advisory committee reports to the state government, um, so we’re a group of disabled people, and um, just to specify I say, disabled people, using identity first language cause that’s my personal preference.
L: Mmhmm
LP: Um, but you know, everyone on the committee of course can and will identify however they see fit. Um, but essentially we are um, a group of disabled people who use our lived and professional experience to provide advice to the government, on, I s’pose, ah, whatever elements of, um, issues and topics that pertain to disability, um, that might arise during the three years of our time on the, on the advisory committee.
L: That sounds fantastic, and so important, so, so glad that you’re there. And as a disabled person, can you tell us what intersections of identity do you navigate?
LP: I guess for me, um, the intersections that I navigate on a daily basis that I am most conscious of, I guess, are, um, mostly just like being a cis-woman and being a disabled woman, um, and I guess I’ve become more conscious of, I guess existing within those intersectionalities over the past few years, like I obviously always knew that I was disabled like I was born with cerebral palsy, well I was born like three and a half months premature, um, and like, have CP as a consequence, but it was almost as though I, I never really kind of, I s’pose identified as disabled, I was just kind of like, okay, like here’s this thing but I’m just not going to tell anyone about it, like I’ve, um, been ambulant, so I could kind of hide it except for the fact that like people would sometimes be like, oh what’s wrong with your leg and I would just lie and be like, I don’t know like [laughs], um [laughs], I fell or something
L: Yep
LP: Because who can be bothered going through the whole story? And then I guess similarly I know that I have a lot of privilege in the sense that I am European. So like I’m not like, white in the traditional, like I’m doing air quotations, um,
L: Yep
LP: But I don’t identify as a person of colour
L: Yep
LP: And like I haven’t, I guess, had to, navigate racism and things like that, and like as sometime who’s Italian, I know that that’s just pure like circumstance and time cause I know that like a lot of my relatives did have to deal with like racism.
L: I’m curious about the way you described yourself. I’d love to hear more, if you can explain to me, like about that because I think that’s something I struggle to explain to people because I’m an, like I say I’m an immigrant, I am an immigrant, but that’s kind of the word I use as a shorthand for, [Laura and Liel laugh] you know, a lot of things. I am like I can pass as a, as you said traditionally white person, I don’t identify as a person of colour but I am an immigrant, I’m also Jewish, so yeah, can you talk about how you identify and how do you navigate that space, a little bit?
LP: So I guess the first thing that comes to mind for me is that like when I was in prep, which is like the first year of primary school, um, I, we had to do an assignment where it was like, we were writing a letter to our grandparents, um, my nonna which is my grandmother, is like my favourite person in the whole entire world. Um, and so I started this letter by writing like dear nonna, um, and then someone else in the class like looked at it and was like nonna, what do you mean, like, it’s grandma, and I was like no? Like nonna, like I just, I don’t think I understood that like everyone called their grandparents like nonna or nonno, so um, I guess identifying as maybe like Australian-Italian although I’ve technically never like explicitly put that label on it but I s’pose that’s one example of how it’s kind of manifested in my life, not in like a lot of like overt huge ways but I s’pose just in like, um, smaller conversations and smaller realisations, that, oh hang on, the way that I see the world, the way that I interact with it, and with other people is shaped uniquely by like the culture and people that I grew up with
L: Yeah
LP: Even in the sense that like, like even now if I step into like, um, an Italian like cafe or shop and I hear people speaking Italian it’s like, it kind of feels like I’ve come home somewhere deep in my soul.
L: That’s lovely, thank you. Can you give an example of what I guess being a disabled woman is like for you? What does that intersection kind of look like in your life?
LP: Yeah. So I guess, um, the, that intersection kind of manifests for me in both, as it would for many other disabled people, in internal and external ways. So, for me, internally I guess it looks like I am slowly learning to unpack a great amount of internalised ableism, um, a lot of which I still don’t even always recognise as internalised ableism until like one of my lovely friends will be like hey Laura. For instance, um, working at YDAS, like I remember one day I had to take um some like sick leave because I was spasming quite badly, um, which is to say like my legs were shaking, that’s, um, sometimes like part of my cerebral palsy and I said to my supervisor ,who is like the greatest person in the world, I was like, oh you know I feel really bad, um, that I had to do that, like I feel like I was kind of like letting everyone down and like I want to do my best because I really value this job and everything and she was like Laura, like it doesn’t make you like a bad employee, it just makes you human and I think she was
L: Mmmm
LP: you know I think that is a bit of internalised ableism manifesting itself there. Um, and it was really interesting cause she even reframed it and was like well what about if like I needed to take time off for like, if I was sick or something? And I said to her well of course, like that’s totally fine. Um [Liel and Laura both laugh].
L: But not for me.
LP: But not for me, no. [Laura laughs].
L: Yep
LP: Yeah, so I guess that’s the um, I guess, well one small part of the like internal experience of navigating that marginalisation, but I think the greater challenge really is, um, the external one. And for me, I think it manifests differently, depending on whether I’m like ambulant, um, so whether I’m walking or whether I’m like choosing to use my wheelchair.
L: Yeah
LP: Um, interestingly, it tends to be easier when I’m using the wheelchair. I think the wheelchair is a symbol that a lot of people recognise as disability, like
L: Yep
LP: even though obviously it is in no way representative of the broad spectrum of the disability experience, as a consequence of, you know, a lack of representation, and um, you know, misinformed societal attitudes, um, people just tend to, I guess conflate wheelchair and disability, uh, so people tend to be a lot nicer to me, um, when I’m in my wheelchair and they’ll get, like out of my way, or like they’ll um, like it’s just, they’ll just kind of like, if I’m crossing the road or something in my wheelchair and I’m a little bit slower, like they won’t toot me
L: Yeah
LP: whereas if I’m walking, um, and like it’s taking me a long time to cross the road or like I’m struggling to get like onto the curb or whatever, like people will like actually toot me, or like gesture at me, or like I’ve had a tram driver yell at me cause I haven’t like gone up the stairs quick enough.
L: Oh my god
LP: Yeah, that that in particular was really awful and I just cried. So I think in that sense the, I guess, the perceptions of other people, uh, what has made it like more difficult for me as a disabled person.
L: And I’m, I’m curious as you talk about that, lack of representation, whether that’s something you know that, how we have that perception of disability equals wheelchair
LP: Mhmm
L: And no wheelchair equals non-disabled, basically.
LP: Yep
L: Do you have an idea, or I’m sure you have lots, but [Laura and Liel laugh], kinda one idea of how can we change that misconception in our society?
LP: Primarily, it’s just, I guess about like education, like, um, and awareness, and when I say that I don’t mean to say that it’s up to us as disabled people to provide that education and awareness because obviously like it’s not, we are not anyone else’s like teaching tool. Um, it’s I guess able-bodied people recognising that they are only ever temporarily able-bodied, um in the sense that you know, as we age, a lot of people do acquire disabilities, um, and it’s not, um an imposition for able-bodied people to learn about and accommodate disabilities, actually it’s a gift.
L: Yeah
LP: Um, and so I think it starts with conversations like the one you and I are having right now. Um and the one that every person, able-bodied or not can have, um, with their friend, their family, their neighbour to just kind of, I guess, to take something that has been invisible and make it visible and bring it into the metaphorical figurative light.
L: Thank you. I’ve got another question about, I guess disability and maybe your experience of it. So, in another episode that I’ve done this season with Jess Kapucinski-Evans, she was talking about how her, in her opinion there’s a bit of a divide in the disability community
LP: Mhhmm
L: between people with physical disabilities and people with psychosocial disabilities. And you identify as a person who also has psychosocial disabilities, so can you talk about, you know, what is your experience of having both, and if you do feel the same in the sense of that division?
LP: That division is something that I have noticed, um, and I guess even in my own experience I was comfortable as identifying as, um, someone with psychosocial disability long before I was comfortable saying that I, um, was someone that had a physical disability
L: Right
LP: Even though I’ve had the physical obviously my whole life, since I was born, but I think because like I would never say it as, I have like a psychosocial disability, I would say like I have anxiety or depression. So I think it is really important for me to, when I speak openly about my experiences with disability to acknowledge that, um, you know, I have both the psychosocial and the physical and I think that particularly given like the language that the NDIS uses around, so like, you know, calling um mental health conditions psychosocial disability, you know, in like my lived experience work, like, um, on the psychosocial disability or mental health side, um, like I have seen and heard a lot of resistance from people with mental health challenges or mental illness or whatever, um, term they might prefer.
L: Yeah
LP: To actually identifying in that way, and actually saying, you know, but I don’t want people to think I’m disabled or I don’t want to, I guess be associated with that word, and I think, that’s a demonstration of the fact that societal ableism has so much to answer for, in the sense that it’s created this sense of, I guess almost, not revulsion, but um, just absolute fear around the word disability, to the point where people, even though it actually is their experience are just
L: Yeah
LP: So reluctant to actually acknowledge that. Yeah, I guess that’s really sad and I’m hoping that maybe slowly, um, that can start to shift.
L: Thank you, and I guess I’m curious about how those identities, you know your physical disabilities and your psychosocial disabilities, how, how do they impact your writing?
LP: Uh, like they both impact it, but they impact it differently. So, um, the psychosocial disability impacts my writing in the sense that pretty much every character that I write tends to have some kind of psychosocial disability, um, that’s just kind of I guess, I, I process the world emotionally, I guess we all do, but I think, um, emotions are my primary means of, um, encountering people and things and um, just kind of making sense of everything, so what that means is that when I write, um, often, like I’ll read through like pages and pages that I’ve written and be like hang on, um, there’s not much actual physical description there, or [Liel laughs], like there’s not much dialogue, it’s literally just feelings, um [Laura laughs]
L: Yeah, I’m just laughing in identification because I’ve got like huge amount of pages that I’ve filled with feelings with [Laura laughs], absolutely no action and nothing like actually happening, so, yeah.
LP: Yess, oh my god, even like fanfiction, like okay [Liel laughs], I used to write so much fanfiction and I would, I look back at it now and I’m like, Laura, you literally, just, there’s no plot, um [Laura and Liel laugh].
L: Yep. Who needs a plot when you have the feelings?
LP: Exactly [Laura laughs].
L: Yeah
LP: That’s how, I guess, my psychosocial disability impacts what comes out on the page.
L: Yep
LP: In terms of how it impacts, like, when I’m able to write, um, I guess like I kind of use writing as a form of catharsis. So whether it’s journalling, which I try to do everyday, or whether it’s kind of trying to distract myself from something like upsetting, um, in the real world, by just like setting a timer for like 20 minutes and going, just write whatever. Just like gets words out on the page, um, and kind of get lost in the words for a while,
L: Yeah
LP: so that when the timer goes off, I can come back to, um, come back to like real life and whatever it was doesn’t seem quite so pressing and overwhelming anymore.
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L: Oh I love that, that’s such a good tool. I’m going to use that if you don’t mind [Laura and Liel laugh].
LP: Absolutely [Laura laughs]
L: Sounds wonderful. Can we talk about dating?
LP: Sure.
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L: Okay. So I, I haven’t been dating in a long time, so I’d to hear about your experience because I know from so many people just generally are struggling with dating at the moment with online dating and a pandemic and everything so as a disabled woman what has that been like for you?
LP: I guess I’ve basically just given up during the pandemic, um, just because I still am very much like not really going anywhere, um, like I will go visit my nonna, who’s is 92 [Liel gasps], in a nursing ho—I know. Um, and she has had covid and it was so scary, so like, going to see nonna like once a week is like my big adventure, but then what that means is that, I’m, there’s no way I’m gonna risk, like, you know, being like oh I’m gonna go, like go on a date with someone in person because that’s just not worth that risk. Also, like, I have, I’ve never really like, um, had, say for instance, like a photo of myself in my wheelchair on like my dating profile and that’s something that I feel like maybe I should do. Just in the sense that like it’s part of me, and you know, like I don’t want to hide my disability, but it’s, and I guess it’s just really fascinating because, I, like, there’s no like outward sign that people are going to be like, oh she has a psychosocial disability, um. Whereas in relationships, it’s the psychosocial disability that is like the hardest one to manage.
L: Thank you. And with how you’re talking about putting a photo of yourself in your wheelchair and I guess, revealing, in a sense that you have a disability, either a physical disability or psychosocial disability, how have you found the experience of actually, I guess disclosing that?
LP: Well in terms of psychosocial disability, I’m very open about that. Like, as I like make a new friend, basically, I warn them, um, because I tend to get like, I call it new friend anxiety, um where [Laura laughs].
L: Yeah
LP: I’ll just be like, ooh, like I really want this person to be my friend but that probably means that they hate me, um, or I’m going to do something wrong and then I’m going to make them dislike me, and it’s going to be awful. Um, so I tend to just be like, hey just a heads up, like I’m a really anxious person, so if I’m seeking reassurance, um a lot, that’s why. Um, or like if you don’t hear from me for a while, like it’s not because I don’t like you, it’s because my brain is telling me that, you know, you don’t wanna hear from me, or I’m a burden, or whatever other um, like maladaptive cognitions I’ve got swirling around in there.
L: Those are really good tips. Have you ever had a time where you’ve disclosed a disability and it didn’t go well?
LP: Not like immediately. Like, like I’ve had times when like, it has been hard for people to manage my psychosocial disability, and that, that sense that like, I do disappear, um, like if I am feeling really anxious I will pull away, um, and I know that that can be really hard, like for, the person on the other side to deal with because it feels like, it feels like I am, like I am actually pushing them away, and that must be really hard and awful. And it’s, like it’s something that I am working through, like therapy, love it. Dialectical Behaviour Therapy in particular, especially love it. Yeah, what has helped me, at least with the psychosocial disability is having an awareness of like how that manifests in relationships, whether it be friendships or otherwise, I’m just kind of trying to, I guess, be like, if you see me doing this, like this is what it means, like it might feel like, um, you know, like I hate you, or I’m mad at you, but actually it means that my brain is doing this, um, and if my brain is doing this, here is what I will do to snap to me out of it. Here is maybe what we can do together, um, to help snap me out of it. And, uh, for the most part, like, people are understanding and lovely.
L: I would love to go back to your writing because we touched on it a little bit before. Can you tell us about your writing. What do you love the most? What do you love writing the most and what are you working on at the moment, if you can share?
LP: When I write, it’s, it’s an act of, I guess, an act of affirmation and an act of, um, consciously choosing to take up spare, whether it’s space on a Word document, or like space on a page, um, and it is a very good, uh, frame of reference for where my mental health is at, um, because there have been times when I haven’t written because I believe that I don’t deserve to take up, like literally, I don’t deserve to use a piece of paper, or um, I don’t deserve to, um, I guess, like you know, take up space on a Word document. Um, so, it, it feels like an act of courage to show up to the page, um, no matter what words I put on there, um, and also an act of like, choosing myself. Like when I come to the page I am choosing to be in the world, I am choosing to honour my ideas and give them life. So, yeah, that, in that sense, um, writing, I s’pose, yeah it enriches the connection that I have with myself, uh, but also, I really like to write letters to my friends and family. So in that sense, I think it also enriches the connections that I have with them. Uh, so I’m currently working on a, uh, historical manuscript, which yeah I’m really excited about, because it focuses on, um, uh, an empress in Austria, her name is like Cece, and she had a psychosocial disability, um, and she’s now really renowned for like her fashion sense, but a lot of um, historians and biographers mention fleetingly her psychosocial disability and the impact that it had on her children and her husband the emperor. But none of the works actually focus on, like how that psychosocial disability played out in those familial relationships which I just find endlessly fascinating, so um, I ‘m writing the manuscript from the perspective of her two daughters, um, looking at how their relationship with their mother and with each other, um, is in some ways shaped by the psychosocial disability in their family.
L: And I was actually going to ask you about your reading experience, which is obviously very related to your writing experience, because I think most people who write, kind of read. So as a disabled woman, how do you feel your reading experience is shaped by your identities? I mean, I know that for me, like it totally, my identities totally shape how I read texts, like for example I always search for like strong female characters and if I see like perpetuation of toxic ideas, like toxic masculinity, or gender binaries or ableism or racism or anything like that, it makes it so hard for me to enjoy the text. And yeah, I guess I’m curious for you, how, how do your identities shape your reading experience do you think?
LP: My identities absolutely shape my reading experience, quite explicitly in the sense that for a long time I sought out books with representation of psychosocial disability and I still do, um. But then once I started embracing and acknowledging my physical disability, um, and, disability pride, I then also started seeking out, uh, books with disability representation. And it’s interesting, I’ve noticed I just can’t consume any media in the same way anymore, whether it’s like books or TV shows, or movies, or podcasts, like there’s a TV show that heaps of people have said to me, Laura you have to watch this show. And I watched the first episode, and actually I think you and I had a
L: We had a Twitter conversation about it
LP: Yeah, ha [Laura laughs]. Yes, and I just, despite the fact that so many people have recommended this show to me, I watched the first episode and there was just terrible, like disability representation, and I just, I’m so angry and I can’t just bring myself to watch, um, the rest of the show. But yeah, so I think similarly with books, like I was listening to, I was reading an audiobook, uh, recently, and it was a, ah, like an Australian author and it was like a, I guess, like a historical drama, and I was a few chapters in and I was like oh yeah the plot’s quite engaging, and then one of the characters just casually dropped the r word, like calling another character that, and I was like just nup, I don’t even care how engaging this is, like get this away from me.
L: So just to explain to people in case someone who’s listening doesn’t actually know what we’re talking about. I’m not gonna say the word, but the r word is just referring to an ableist slur which is just a word that was used, ah, basically against disabled people for many years, and so we’re not going to repeat the word, but that’s what we’re referring to, yep.
LP: Um, having said that, though, we’re very lucky in the Australian literary landscape in the sense that we do have a lot of, um, Own Voices writers. Um, and just Own Voices for anyone who’s not familiar, um, refers to writers from, um, any marginalised background, although as far as I’m aware it did originate with a disabled person. So, say for instance, like a disabled writer writing a disabled story, and so we have so many great examples of that in Australian literature, which is wonderful, um and I seek those out, and absolutely devour them.
L: Yep, same. And I guess it kind of leads me to my next question because I guess when I read, like you say, that book that had the r word in it, I feel the same, like I want to, like it makes me want to write and email to every single person who was involved in making that book come to be like printed, through the entire process, um, and it makes me very angry that all these people in the background, the editors, the publicists, all of those people, and you know, sensitivity readers, whoever was involved, kind of didn’t raise any flags, and it leads me to my question about, you wrote an article recently for, I think it was originally for Hire Up, that was then republished, is that right?
LP: Yep
L: Okay, um, so the piece was about Lizzo’s use of an ableist slur, and do you mind if I read like a little bit from there, is that okay?
LP: Yeah sure.
L: “Lizzo is not the only person responsible for the content of her songs. Her producers, her co-writers, her management, and a whole host of people must have heard that song. Not one of them stopped to consider that it might be not appropriate to throw around a slur, the use of which would serve to normalise and reinforce dangerous and ableist ideas.” I guess I’m wondering about something that, you know, your article didn’t get to, which is, what do you think needs to change, apart from us obviously all of the disability advocates and hopefully allies calling out these problems, but they keep occurring and they’re everywhere as we see. We said, they’re in TV, they’re in podcasts, they’re in books, they’re in articles, they’re everywhere.
LP: Yep
L: Um, so what do you think needs to happen, like how can we kind of, change that from maybe a higher level, like how can we structurally change those things?
LP: That’s a really good question and I guess you really touched on it in the sense that it does have to be systemic. Um, you know, um, we can start from the ground up, and start with those, um, like individual actions, but um lasting meaningful change, um, has to come from decision-makers, it has to come from, you know the people who have influence and power, using that to support us. Um, and I think there needs to be people with lived experience of disability at all levels of leadership. Um, and I think that’s why I’m really passionate about things such as the Victorian Disability Advisory Council.
L: Wonderful, thank you. As lots of other emerging writers, and emerging artists do, you also have a day job. Can you just talk about how you manage to kind of have a day job, and then do you writing and your advocacy, like it’s a lot.
LP: It is, um, a lot. And to be honest, um, I don’t always manage it vey well, uh, you and I were talking before we started recording about a particular week a couple of months ago, when I just pushed myself way too hard and regretted it. Um and so for me, I think like managing it, is about, like we a lea, like I’m very lucky that I’m, um, employed, on a part-time basis, which means that I accrue leave and can take that when I need to. And also, sometimes a big part of it is just saying no to things. Like, um, as hard as that is. Like there’s so many like opportunities for writers and creatives in the world, and you know, if, if I really like, um, you know, like, if I had my way so to speak, I would be saying yes and applying to all of them, [Liel laughs] um, but um, you know.
L: I laugh in recognition [Laura laughs]
LP: Yes, like yes, I’ll like pitch to that journal, I’ll pitch to that publication. Um, oh and to that competition, yeah.
L: Yeah that would be a full time job.
LP: Yeah, so I think for me it means like managing my spoons really carefully, so thinking like, for instance with my cerebral palsy, like I have to do physio, um, to kind of help me manage the, um, the spasms and the pain, and fatigue and stuff that comes along with that, ah, but, there’s a trade off in the sense that if I do physio, like I then have, like a great deal of fatigue and I then can’t write, so I’m kind of like, okay, it’s a physio day, so it’s not a writing day, um, and like sometimes that’s really hard. But as a consequence, I don’t do my physio anywhere near as much as I should.
L: Can I just tell you something my physio once told me?
LP: Please
L: She actually told me that they prescribe, the amount they prescribe is actually something like 3 times more than what they think people should do, because they know people don’t do enough, so.
LP: Oh [Laura laughs].
L: FYI you might be actually doing enough [Liel laughs]
LP: Oh my goodness, okay that is so reassuring. That is one of the most reassuring things I have ever heard. Oh my god, okay.
L: I know.
LP: Wow
L: Cause she’d say things to me like, oh do this three times a day, and I looked at her cause we had a good relationship and I said to her, I am not going to do that three times a day, you know that [Laura laughs]. And she’s like, yeah I know, even if you do it once a day, it will still be effective, we just say about three times the amount you have to do because we know that people don’t actually reach those goals that we set for them.
LP: Oh my gosh.
L: There you go.
LP: Okay, I want to tell everyone I know this to just be like, see, I am actually doing enough physio [Laura laughs].
L: So that is, that is a really good, though, description and explanation for people to know, you know sometimes, a physio day is not a writing day, um, and it’s that compromise.
LP: Um, yeah I guess it’s also like, um, taking other steps to kind of conserve my energy so, um, it might be that I like, you know, meal prep, so that I, um, like don’t have to cook after work. Um, or it might be that I, like as much as I care about the environment and try not to use like, um, pre-prepared meals, sometimes I just have to accept that like if I’ve had a long day at work, um and/or if I have done physio, um, like, it just hurts, um, to like, um, you know to get up, and like, you know, cook and whatever else.
L: Chop
LP: Yeah, oh my god, chopping, how do people chop vegetables? I don’t understand.
L: Exhausting.
LP: Yes, oh my god. The best thing about having, like being on the NDIS, chopped watermelon. I was talking to my friend who also have cerebral palsy and I was like I really want watermelon, but I can’t chop it, and she was like, Laura, you just ask your support worker to chop it for you, and I was like, oh my gosh, amazing [Laura laughs].
L: Yeahh, that’s a very good point, about actually going, you know I can ask someone for help, whoever that person is.
LP: And I think we forget sometimes, or at least I forget, um, and I just, yeah, think well no I can’t do that, but actually I can, like there’s no shame in that, actually there’s enormous strength in it.
L: I would love to hear amongst other things, you’re also passionate about accessible language.
LP: Yes
L: So, this aspect of accessibility is often really forgotten in mainstream understanding of equity and disability justice, I think. So can you tell us what has brought you to this passion and interest?
LP: I guess, you know having been a writer for such a long time, I’ve always been fascinated by, um, language, um and the ways it can unite us but also divide us. Uh, when I started working in, like communications and disability a few years ago, I started to realise that language could divide us in an even more significant way, in the sense that by making communications like full of jargon, by using complex language, long sentences, long paragraphs, um, and other features of language that might make it harder for people with various disabilities to follow. What we’re saying is, you don’t belong here, there’s no place for you here, and I don’t want to be part of anything whether it’s a program, an organisation or a sentence, um, that says that to any other human being, so like I find that making sure that every kind of communication that I create both personally and in my work, um, considers accessibility and considers um the language that I’m using is essential. And so what that means is that sometimes I will have to use, like a jargonistic word but then if I do that, um, to make sure that I’m providing a definition immediately after, in much the same way that you previously provided context, uh, when we were talking about a particular slur. And the fact is that accessible communication isn’t hard, um, and it doesn’t just benefit disabled people.
L: How do you then, in your creative writing, how do you, navigate the need to write in an accessible way and your creative flair, you know?
LP: Um, that is something that I struggle with in an, like, an ongoing way. If I’m writing something to be published on like the Internet, um, it’s easier to put in place, um, accessibility features, or like say if I am using like a word that’s jargon or that has certain, like um, connotations, you know I might put what’s called a tool tip, um, where like you can hover over a word and then it’ll show you the definition, but if I’m writing something for, say, like that’s gonna be in print to be honest, it is really really hard, um, and I I don’t have like a solid answer yet. Um, I guess some of the things that I can and do actively um try to consider are, like the size of the font that I use and the particular font that I use, um and then also making sure that my paragraphs aren’t too long for the same reason. And I guess that’s not like a content consideration, but I s’pose is a testament to the fact that accessibility doesn’t have to be and isn’t just about content. It’s about every feature of a message that you’re conveying.
L: People don’t often realise this but as a, like I studied English as a second language in school, from first grade and I was very privileged to also have like exposure in TV and music and all of that. But we never learned cursive and so I still don’t know how to write cursive properly and also reading cursive I find really hard because I’ve not had the exposure, I mean the only English I would ever read was from books, either text books or you know, books online etcetera, so cursive is very inaccessible even to me. I get be—I’m getting better at it with time, but still, I would not choose cursive in my communication as well, for the reason that I know it’s really tricky. And I guess I’m wondering if we can kind of finish our conversation Laura with you telling us, what does intersectionality mean to you?
LP: So intersectionality to me means I guess opportunity, um, like, I’m choosing to look at it as, um, an opportunity to consider the ways in which like, not just my identity, but other people’s identities, um, give them and give me, like a unique perspective on the world, um and I think it would be easy to, think of intersectionality and marginalisation and belonging to a marginalised group or living on the intersections as something that offers disadvantage and you know, there’s no denying that it can, and it does. Um, but it also offers so much potential, um, and so much hope, so for me, living on the intersections has given me an enormous amount of empathy that I don’t think I would have had otherwise. Um, and that’s just one example of the ways in which I guess intersectionality can be, and is, um, that source of hope and growth, um, like the people that are changing the world, the people that are changing the status quo, um, and challenging traditions, are those of us who, in whatever way, live and exist in and on the intersections.
L: I love that answer. Um, so Laura, tell us where can people find you and support your work.
LP: Yeah absolutely, so I’m thisgirl, as in like t h i s g i r l underscore writes, w r i t e s, um, on twitter and Instagram, and I have a WordPress blog called Laura’s adventures in Literature, where I discuss disability representation in literature.
[Theme music starts].
L: Wonderful. And all of these links will be in the show notes, so everyone who has listened to the episode right now, go down to our show notes and just click on them and go and follow Laura. Thank you so much for coming to (Un)marginalised Laura, it was so lovely to have to you today.
LP: Thank you so much for having me.
L: Before we go, a grateful thanks to the City of Melbourne Arts Grant 2022 for supporting this episode and the entire second season of the (Un)marginalised podcast. I would also like to respectively acknowledge the traditional owners of the land on which this episode was produced, the Boon Wurroung people of the Kulin Nation, and pay my respect to their elders past, present and emerging. As we tell our stories, I want to highlights that traditional owners of this land have been storytellers for generations. If you enjoyed or learned something from the episode, please rate, review and share it with a curious person in your life.
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13th November 2022: S2, E4 with Zoe Simmons
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Liel (L): Shalom everybody. I’m Liel K Bridgford and this is (Un)marginalised. Before we jump in, please note that the following episode contains discussions about fatphobia, ableism, mental illness, suicide, sexual harassment, and assault. So please take care as you listen and check out our show notes for support options. Today on the show I have Zoe Simmons. Zoe is an award-winning journalist, copywriter, author, editor and speaker with a passion for making a difference. As a journalist, she has been published around the globe, including by news.com.au, the New York Post, Daily Mail and more. Zoe runs her own copywriting business, has been published in three books, and is writing her own. Zoe has now spoken on podcasts, print, radio, and TV on disability, chronic pain, mental illness and bushfire recovery. Welcome Zoe, thank you so much for being here today.
Zoe (Z): Thank you so much for having me, it’s great to be here.
L: Great, well do you want to start by, um, telling us what intersections of identity do you navigate?
Z: So, I know it might sound strange, but before being invited on this podcast, I didn’t really think a whole lot about how intersectionality impacted me, which is weird because I, I literally studied a subject on inter-intersectional feminism at university so, I, I just never considered it would impact me. But, um, obviously it does, um. And I did, I’ll admit I did google before this, um, and it turns out there’s more factors than I even initially realised, um.
L: really?
Z: Yeah, I, I didn’t realise so many things counted as intersectionality and then I thought about it like, hm, you know what they do have an impact, so, firstly I am a woman. I’m also a disabled woman, and I come from a relatively poor socio-economic background, um, so that’s another factor. And I didn’t realise this was an example of intersectionality, but, um, weight also can be, and hell yeah, fatphobia is so rampant, especially in the medical industry, so you know, all these things combined, do have quite an impact on my experience and they all overlap and intertwine and, um, I do obviously have elements of privilege, like for example, that fact that I’m White, the fact that I’m cisgender. Um, but it’s just interesting how those things, you know, interlink, and you know, just because you have one privilege doesn’t necessarily mean you don’t have another disadvantage for example than. Yeah so that’s a bit eyeopening to research.
L: Um, and can you, I guess, explain in an example, perhaps how that affects your life, you know, you said that it does influence your experience. Can you give an example of, something that you’ve noticed?
Z: I mean I think, the medical industry is particularly prominent for me at the moment, um, you know, I think, as women, or you know, people with uteruses, generally, um, you’re more likely to not be listened to, um, the conditions that primarily affect us, like for example, endometriosis, adenomyosis, fibromyalgia, um, chronic fatigue, um, ME, all those things, um, you know, were quite often dismissed, and those things aren’t often as researched and um, even in other conditions, it’s often only really men’s experiences, that are researched and documented, so that’s definitely impactful.
L: Sounds like it is all kind of relat-you know, inter-related for you as well.
Z: Yeah. I mean, gosh, the medical industry, is, not as good as I thought it was before I had to use it, I guess. Um, like I remember the first time I went to a doctor for help with my pain, and, um, she was like, oh it’s dairy, and I was like, hm, no it’s not. And she’s like, yeah it’s dairy, and insisted and I was like, it’s not because I am vegan and I don’t eat dairy and I haven’t for a couple of years now. So, you know, it’s not that, and then she’s like, oh it’s your weight. And like these comments without doing any tests, without talking to me for more than a couple of minutes, it’s just, I-I just can’t believe things like this happen so much and that’s a tame example compared to what other people experience.
L: I’m sort of wondering when, I mean you said that you’ve researched coming up to our conversation, but you told me that you’ve only realised you had a disability about a year ago, even though you’ve been living with it for quite a while. Can you tell us how that happened, and also, how did that kind of impact your life? What changed for you when you realised you did have a disability?
Z: Um, well, technically I’ve been disabled my whole life, thanks to bipolar and anxiety, but I didn’t realise those were mental illnesses, um, I mean I started experiencing chronic pain, although I didn’t realise it was aspects of chronic pain back then, um, but I remember it being as early as—as young as 12, and you know, experiencing ridiculously painful periods that you know, I remember, you know, not being able to run in PE, and then being dismissed and told, you know, you’re just trying to get out of PE, and you know, oh, just dismissing you, just go on the pill, like it’s fine, it’s normal, and it wasn’t until I was, um, in my early 20s, when I broke my wrist and I realised that my abdominal pain hurt more than a broken bone. So I was like hmm, no, that’s, that’s definitely not normal, um.
L: Yep
Z: You know, then, all these other symptoms began to emerge. My pain became constant regardless of my period, um, agonising abdominal pain that feels like you’re being stabbed and shot, like someone’s pouring acid in there, not pleasant, um, and you know, a lot of bone pain, nerve pain, extreme fatigue, all these things that, you know, I, never considered that what I was experiencing could be disability because I’d never really seen it represented, um, you know. We kind of only see disability in the media as either the tragic, the tragic disabled life, or the super fit Paralympian, and that’s not just reflective of most people’s experiences [Zoe laughs]. Even though I had multiple disabilities at this point, I was like, no I’m not disabled, I’m just—, and you know, that’s internalised ableism talking, um [Zoe laughs], then I kind of realised that it’s okay to identify as disabled, like it’s not a dirty word, it’s not a bad thing, and like, I saw the impact it had on, like my jobs, my relationships, my mobility, like I now often need to use a walking stick or a wheelchair, and sometimes just walking to my lounge room exhausts me, and it’s like, how are those things not a disability? Um, [Zoe laughs].
L: Yeah. So what happened, as you kind of said, I can identify as a disabled person? How did that change things for you?
Z: I mean, the point in time that actually kind of fully clicked that I was disabled was pretty traumatic. I just had my second surgery looking for endometriosis, and they still couldn’t find it, you know, I felt so, lost and you know, what is wrong with me, and um, the disability community kind of helped me see that I’m valid even without a diagnosis, like your symptoms alone are valid enough, like. It was pretty heartbreaking, I guess to realise, um, not necessarily, you know, realising I’m disabled, but realising I’d been battling with these things for so long, and not recognising their impact on me, um, but it was also a good thing because it helped me to advocate for myself. It helped me to realise that the system is not on your side, generally speaking. Um, you know, you do have to fight to get answers, you do have to fight to be heard, and, um, you know, it spurred me into advocacy and it, like, being disabled also helped me feel more comfortable in you know, recognising my symptoms, and that yes they do impact my world, I’m not just, you know, making up excuses, um, but also recognising that I was disabled also meant that I could ask for accessbility because I didn’t realise I could do that, um. It also helped me find a sense of pride, like, I think that’s pretty, pretty badass, you know to experience all these horrible things, but then still follow your dreams, not that you have to do anything to be productive to have value, but just, you know, that you can still achieve things, it’s not, you know, this horrible barrier necessarily, um, you can still live a beautiful life, um.
L: Yeah. It’s a huge thing, I think, you know, so many people feel, so many, either non-disabled people or people that have just been diagnosed or just acquired a disability that don’t even identify with that word yet, feel that life isn’t worth living if you have a disability, or life isn’t worth living if you don’t have your full mobility or if you are in pain like it just seems like this black or white kind of situation, like unless you’re fully capable of like running a marathon, then why would you even get up in the morning, which is so ridiculous, like many of us live with disabilities and don’t do things like marathons or climbing the Everest or whatever, and we still have a wonderful life, that’s really meaningful and just fantastic, so. But I’m also so sorry to hear about the trauma and I think it’s so important to acknowledge that trauma, and I guess it kind-, it brings me to my question about the medical model because we, versus the social model of disability because, obviously the medical system that we have is based on the medical model of disability, so what I mean by that is that you know, most medical professionals come in, and that all their learning is about how to fix whatever is wrong with our bodies, whatever it is, a broken bone, our brain, whatever, versus the social model of disability that obviously centres the disabling part on society, so um, rather than our bodies or our minds. I know that it’s a recent journey for you, but have you had time to kind of ponder whether you identify more with the model, with the medical model of disability versus the social model?
Z: Um, I actually have a little bit. One of the big factors in helping me realise I was disabled was reading, um, you know, articles and books written by other disabled writers, like I read Growing up Disabled in Australia, and I remember just reading the foreword, by I’m pretty sure, Carly Findlay wrote the foreword, um, but I just, you know, read that and I was like oh my gosh, that is, that is spot on. Um, you know, the medical industry sees us as the problem, and that’s, pretty awful. Like yes there is some things that need to be, you know, treated, but seeing us as the problem kind of casts the blame on us, and it’s like, a lot of our conditions don’t have a cure, like, it’s just, it’s just, as-is. Like are you just going to tell us we’re permanently broken? Like no. And a lot of the barriers we experience are because of society.
L: So can I ask about your mental illness that you described and I guess the way that you see the, social model of disability, how that relates to your mental illness or inaccessibility, like how does that kind of, you know, like what is inaccessible, do you think in society, for you, as a person with a mental illness and what is accessible?
Z: Um, yeah I mean honestly though, I do feel like my physical disabilities kind of impact me more when it comes to accessibility. So there are a lot of things that are really inaccessible, I mean from a mental health perspective, I think it’s just the assumption that you don’t have mental illness, that you don’t have anxiety. And like, I have a complex mental illness and I’m pretty sure I also have PTSD, and like you know, these things are not considered like, you know, requiring, an in-person event or something where you all have to stand up and talk, like one if you can’t stand up, that’s a ridiculous thing to ask people, and two, um, you know, that is really anxiety-inducing, it’s, you know, often just expected to d–, oh just move past it, it’s just just in your head, and like, it is in your head, but that doesn’t make it any less real. It is still impacting you and it’s still valid, um
L: Yeah
Z: In terms of physical inaccessibility, oh my gosh. Um, I’m pretty new to being a wheelchair user, I use it part-time, I have a manual chair, um, but I found it so hard to like navigate society, like things you wouldn’t even think of when you’re able-bodied. Like being able to get into a physical location, or like, the slopes on a footpath, the footpath ending, like little lips that connect the road and the footpath and if they’re too big you, like hit it like a rock, pretty scary. And like trying to access public transport in particular is not great. I used a wheelchair for the first time on a train not too long ago and it was genuinely terrifying, like there was no signage on what do, I went to like the little part of the station that had a little disability sticker, and I thought you know, that’s where I should go. Nope. They don’t have that information anywhere, um, you know, I think they, they say to go to a particular part of the carriage but then, I went to that part and no-one was there, um, and anyway, I tried to end up getting in the chair and I forgot, sorry I tried to get in the train with my chair and I forgot that I have little front wheels and I got stuck in like the gap between the train and the chair and that was so scary, I was just convinced I was going to get sucked through and die and you know, I’m on an angle, and other people on the train came and moved me which was really humiliating and you know, I was crying cause I was just, I don’t know, just fear of being crushed by a train took hold, you know, being seen, like thinking, you know anxiety coming in, like oh no people are watching, and stuff like that, just, just really horrible, and there are so many things that are inaccessible, like, so much.
L: It is very overwhelming and something that a lot of people don’t really think about until they actually are in that chair, quite literally. Um, can you tell us about what you love doing most, what are you into at the moment?
Z: So, I have a lot of different, I guess, hats, creative-wise. I worked with a lot of like really cool small businesses, but also some big organisations I’m really proud of, so I’m going to name drop. [Zoe laughs]. Um, like Women with Disabilities Australia and like Youth Disability Advocacy Service, Hireup, like just amazing organisations and, yeah I’m also a journalist, so I freelance for a lot of different publications and organisations, um. I do quite often write about my own experiences, um, but I do also write articles about other people’s stories to, I guess, help people feel heard and share, I guess, a bit more diversity in the media, um. I, I, also like to, um, share fundraisers in my stories, so I often help people raise money that are in vulnerable situations, um. You know, I speak sometimes, like I’m, I’ve spoken at the National Young Writers Festival, um, I’d love to do more. I started doing a little bit of lived experience work, like I’ve just, I’m about to start a role as a Lived Experience Advisor with the Royal Children’s Hospital, but.
L: Fantastic, and congratulations on all your publications and all the, you know, speaking gigs that you’re getting, and writing and sharing experiences, that’s fantastic. And, you’re also writing your own book. Can you just tell us about it, give us the elevator pitch?
Z: Yeah absolutely. So, um, after experiencing the Black Summer bushfires, I went back home to Batemans Bay, and um, on New Year’s Eve 2019, and um, unfortunately got caught in the bushfires and um, I just remember hearing all these stories that just weren’t being captured and it just wasn’t enough for like the 1000 word articles, so I decided to write a story, and like there’s all these..there’s so many things that people just don’t know about a bushfire and like its impacts and its trauma and like how severe these things like. Like, um, for example, one of the people in my book is, um, a father that, a seventy-year-old, that had bombs the size of firetrucks landing all around him, like firebombs, um, just landing everywhere and you know, his daughter didn’t know he was alive and thought he’d died in it because the phone reception cut out, it’s just like what. Um, and we have been forgotten, so that’s also something I’m going to be talking about in my book and the impacts of being forgotten because as soon as Covid came in, no-one cared, um, even now I can’t get a story accepted about the bushfires, which is so disheartening because people are still homeless, people are still struggling so much. Um, so my book is about that as well as my own experiences, um in the bushfires, my emotions, being a disabled journalist, uh, my own trauma of the day which was not great. Um, it’s very hard to write a book especially when you are trying to earn money to pay for all the expensive medical stuff and you know, dealing with sta-medical stuff and then, you know, needing to put your energy into stuff that pays your bills and you can’t put your energy into your projects, um.
L: And in order to pay the bills you run your own business. Can you, and you talked about what you do in the business, but can you tell us about why you started your own business, I mean you were working for other people. What happened? What was it about the kind of, traditional workplace that was inaccessible to you?
Z: I mean there were a lot of factors, um, at that stage I didn’t fully realise I was disabled, and like I didn’t know accessibility applied to me, so I didn’t ask for the things, um, but there were some things I was asking for that I knew’d help, like for example, remote work, and I remember that, um, I was like, it takes so much energy to commute to a workplace, to be a physical location, you can’t manage your pain as much, it makes it worse, it makes your fatigue worse, it’s just, all around not great for disabled people, um, and I remember them saying, like oh, if I’m in pain I can’t come to the office, and they were like oh no you have to, but if you’re in pain don’t come, well I’m in pain all the time, so, um, you know, there was a lot of that. And I just didn’t feel like I would be able to grow as much there and I wanted to be able to look after myself first, I wanted to be able to manage my appointments and my symptoms and not feel bad for asking for time off or resting or you know, working how works best for me, like from my lounge with a lap-desk, or you know, in bed or in my pyjamas, in ways that I can manage my pain when it happens, and it’s made me so much more productive, but.
L: You recently wrote a piece in Body and Soul called “It’s Complicated: A Love Letter to my Mobility Aids”, which I love that piece, by the way. I guess, what you were talking about in that piece is the changing relationships that you’ve had with your mobility aids, how you’ve basically transformed how you feel and view the mobility aids in your life, um, and ends with great love, and I would really love to hear kind of from you, about how you’ve made that transition, because you might know that I work as a Provisional Psychologist and I mainly work with people that have disabilities or chronic health conditions and so many people struggle with the idea, even, of using a mobility aid, um, and people that are newly diagnosed or even people that have lived with disabilities their entire life, um, so how did you make that transition?
Z: Ahh [Zoes laughs] With great difficulty, to be perfectly honest, because there is so much stigma around mobility aids and it was really hard, I remember wanting to use mobility aids for such a long time, and you know, trying to hold yourself to ableist standards, like you can walk around the gallery and stand for an hour and walk around Melbourne, that’s fine. No it wasn’t fine [Zoe laughs sarcastically]. You know, it would often lead to a flare and making it worse, and you know, you’d often think to yourself, oh, you push through, and you’re not disabled enough, but you know, pushing through only makes it worse. Um, and I vividly remember the day I used a mobility aid for the first time. I was seeing a gallery with a friend, and I was just in so much pain, I felt like I was going to burst into tears with every step, it was just agony everywhere. Um, and you know, I asked for the first time, you know, do you have any mobility aids for hire? And anyway so I ended up using a wheelchair for the first time, and it was such an emotional experience because it helped me so much, like, I couldn’t believe I could just exist without exasperating pain in every one of my movement, like I was in pain, but it wasn’t as bad, and you know, I could just enjoy the sh-the gallery, I didn’t have to leave early because of my pain, and I almost cried, that’s how much it made an impact to me, and you know, I remember wanting to use one again and um, trialling different ones, and you know, even my medical team, are like why do you want to do that? It’s like, I don’t know, moving easier, that sounds nice? Um, so I eventually mastered up the courage to get a walking stick, and eventually my own wheelchair and um, it still is very hard, I’m still very nervous using it, like, um, you know around people that haven’t seen me in a wheelchair before, ah, I’m going to an event tonight where I’m going to be using a chair for the first time around some people and I’m so so so so so terrified, of you know, their judgement and their internalised stigma and ableism.
L: So can you, tonight, you’re going to this event, what do you do? I mean how do you deal with that first moment, with that anxiety and worry about what they’re going to think, what they’re going to do, all of that? How do you deal with that?
Z: Oh, I am so anxious, um. But my first, uh step was mentioning it. I mean I was so anxious about this, I literally spoke to my psychologist for like half an hour about it, like wahhh. Um {Zoe laughs]. But, eh, just, you know, oh hey by the way, um, I may need to bring my wheelchair, so, you know, um. I am still so nervous though, um, also about like, is the location accessible, I don’t know, like, um, so how I’m going to deal with that is, I guess just use the mobility aid even though I feel so anxious, I feel so imposter-symdrome-ey, you know, just being like, no I do need this, don’t let that little inner ableism voice tell you that you don’t because you do.
L: I really like that. I think that distinction between the inner voice that is internalised ableism that we all get in society because ableism is everywhere, so we all internalise these ideas even if we don’t realise them, and then being able to distinguish between okay, that’s my internalised ableism voice talking right now versus this is what my body’s telling me right now and I’m going to listen to my body versus my internalised ableism voice and just let it be there.
Z: Absolutely. And it’s just wild how pervasive the ableism is. Like I posted a picture of myself in a chair for the first time and like that was such a happy, joyful moment for me, like yes freedom, woohoo, life changing. And then someone messaged me saying like, oh it made me so sad to see you in that chair, just so sad. It’s like, why? I’m not sad, I’m very happy. I’m sad about the slopes and the fact that I can’t afford a good chair, but you know, pretty good otherwise, it’s just–
L: I got a very similar reaction even, not even to using mobility aids, just to posting the first photo that I ever posted with my legs kind of exposed, and I got these reactions of like, why are you doing that? You know, aren’t you worried about what people are going to say, um, which was exactly the opposite to what I was feeling, I was feeling such a big relief, it was like a massive, like a mountain off my shoulders that I don’t have to hide anymore, that’s it.
Z: Like even if you don’t show these things you’re still experiencing them, and people are still experiencing them, so we have to share. Like how else will you know that other people have these other experiences and these barriers that we need to address if we don’t talk about it and share about it, and also, you know, pride in disability? That’s–
L: Well it’s exactly the opposite, I think pride is almost like the opposite of shame. And when we hide or we feel like we have to hide, there’s like shame on top of our experience that we’re going to be having anyway. So I’ll have a pain, or fatigue or whatever it is, symptoms that I’ve got. And then if I feel shame about it, it’s– just creates so much more suffering and then replacing that shame with pride, just makes things so much easier because you can actually feel allowed to using mobility aid, or feel allowed to sit down on the train, or um, so feeling allowed to do those things is such a big relief.
[Theme song plays].
L: Now so all those experiences that we’re talking about, all the recent works that you’ve had, is all created here in Melbourne, in Naarm. Can you, but you’re not from here originally. So can you tell us about why you moved, where you moved from, a little bit if you want, um, but why you moved and how was that transition, because I mean, moving is a big thing for anyone, let alone someone that experiences the things that you’re experiencing.
Z: Um, well, so I was born in, uh, Campbelltown, but when I was around 10 or so we moved to the south coast of New South Wales. Um, you know, I then moved for uni, um, to Wollongong, bit later on, um, and, you know, I moved to Melbourne in 2018 and you know, 2017, 2018 were honestly really not a great year for me, um, bit of a trigger warning here, I guess for mental health and, um, suicide, um, but. I was just really not in a good place. Like I was working a job that was so exhausting, with like, it was like two hours travel everyday and it was full time hours and like they expect you to do like extra hours as well, unpaid, and it was just so exhausting, and I remember coming home every day and just sobbing about how miserable I was and then, um, some other not-so-great things happened, um, like my, uh, I was living with my nan briefly, um, who has quite bad dementia, um, and then a long-term relationship broke up, pets died. Um, I didn’t have anywhere stable to live, so I was kinda couch surfing, um, I was drinking way too much. Um, if I’m being honest I think at once stage it was almost everyday and I was just so sad. I just, I just wanted the pain to end. Um, so you know, I knew I needed to change something especially because I, uh, you know, ah, well [Zoe clears throat], I tried to take my life, I was quite close and the last second I stopped, because I got, I felt guilty about the person who would find my body [Zoe sniffs]. I felt too guilty and, you know, too guilty about making my mum cry, so I didn’t, but I knew I obviously needed to change. I don’t think I would be here if I hadn’t, so. I just decided to have a fresh break, so I packed up everything I owned into my little Toyota Corolla, drove ten hours by myself and moved into a friend’s spare room. Um, eventually got my own place, but I definitely think doing that saved my life, and also a lot of great experiences and things that I wouldn’t have learnt or done if I hadn’t have made that move.
L: Thank you so much for sharing Zoe and I appreciate your honesty and how hard it is to share this, but, I’m, I’m so grateful that you’re sharing because it’s such an important experience to talk about.
Z: Ah, you know, this not talking about literally kills people. And you know, not talking about it, as we said, you know, makes you feel like it’s shameful, and it’s it’s not, it is okay not be okay, it is not your fault, and you know, we don’t really address that in our society, um, you know, you’re just told to get over it, or you know, stop being an attention seeker, it’s like well I would like medical attention, does that count? [Zoe scoffs].
L: So there’s a lot of really unhelpful responses to people sharing how much they’re struggling. I guess, when you were feeling like that was there anyone in particular, or anything in particular that you found really helpful or something that you think, this is how someone can help?
Z: I mean I think the most important thing, whether it’s mental illness or chronic illness or disability or really anything that impacts you, like, just believe them. Um, it’s really hard to talk about it, and especially um, you know, I remember telling a family member that I had bipolar and they were, they were not pleased, they were basically, you know, ashamed of me, like, yeah, it wasn’t, it wasn’t a great experience, and that’s definitely not how you support someone with mental illness. Um, you know, even small things can help so much, like from a mental illness perspective, like you know, just reminding you that you are loved, that you are not a burden, that the, the nasty voices in your mind are not accurate, like all those things, just reminding that you are valued, you are loved, you are worthy and you have a place in this world, you know. I mean practical things, like you know, for example, helping cleaning, helping do errands, just helping do basic stuff that’s so much harder when you experience a disability, um, you know, just imagine what it’d be like if you were experiencing that, and what would you want?
L: Yeah, believing is such a big thing that your point about being believed brings me to my experience of, as a disabled girl and a teenager, I experienced quite a lot of sexual harassment and also sexual assault, and I wasn’t believed. One experience I have had, I was fourteen and I was walking one day from, I was leaving, um a clinic, and a taxi driver approached me and started making very inappropriate comments about my body and about sex. Um, he was getting closer to me and approaching me and I was on crutches, I had a massive brace on my leg, it wasn’t like a situation where I could run anywhere. Ah, there was no-one else around, it was empty street in a really quiet town where we were living, and I was just imagining how he was just going to just shove me in taxi, and just drive and no-one would know, or my house was down the road, I was just, I knew that if I crossed the road to my house, he would just, I could just imagine him following me. Luckily didn’t happen beyond that, I managed to walk over to a neighbour’s house and he eventually left, but I am still carrying that trauma, um, until this day and I guess being in that position where I couldn’t run away, I couldn’t defend myself, I was on crutches, and he knew that, and I could see in this eyes and in the way that he was talking to me that he knew that, and he was targeting me for that reason, um. It was, terrifying and still to this day when I walk down the street, and I’m limping, I think who is around? Who is watching me, and if I’m limping are they, they’re going to target me? And yeah some other experiences of being sexually assaulted, which I’m not going to share the details of, but, ah, what is important for me to share is that I wasn’t believed and it was in a, I was assaulted by a doctor, who was examining me for my disability, so if I didn’t have a disability I wouldn’t have even been in that room. So, yeah thank you for listening to my story, I guess the question that I wanted to ask you, Zoe, without going into any details at all from your experience and what your perspective, what do you think we can do to make the world a safer place for disabled girls and women?
Z: Ah, I mean firstly I just wanna say I’m so sorry you experienced that and honestly I have had this conversation with so many, you know, people, and I-I haven’t spoken to a single woman who had not experienced some form of harassment or assault, and obviously when you have other aspects of intersectionality like, you know disability or race, or you know, LGBTQIA+ people, it only makes it, you know, more, so it’s, it’s, I think it’s a lot more prominent than what statistics say, like they only say that one in four women have been [Zoe laughs disbelievingly] sexually harassed, like that is, that is not accurate. I would–
L: Well, absolutely, sorry and I was just going to say, my experiences are not counted in any statistics because no-one recorded that experience, so
Z: Um, you know, even before I realised I was disabled, I experienced things, um, like I remember when I was fourteen and I was wearing my favourite skirt and a group of older men drove past and they were, you know, wolf-whistling, and making comments and I was just sitting alone at a bus station with, you know, like no-one else around, like, I–who knows what they could have done and I didn’t even recognise at the time, my fourteen-year-old brain was, like, oh thanks for the compliment, which now I’m like, that is disgusting, you are adult men preying on a child.
L: It’s disgusting anyway, no-one should be doing that, no matter how old those men were, and no matter how old you were, that’s unacceptable behaviour, but that’s the message we get told as girls, and then we internalise that is that you know, that any attention is good attention, so if someone like grabs you in the middle of a nightclub, you know that means that you’re valuable.
Z: Yeah, oh you’re wanted, ooh. You know you can do all the things to protect yourself and you can still get sexually assaulted and harassed and the fact that most of these things actually happen, you know, in the home, and um, I’m not, I don’t think I’m open to talking about this necessarily publicly, but I have experienced it, unfortunately, more than once. Um, it’s just, really terrifying how pervasive it is and you know, I often use my walking stick and I wonder if, you know, that makes me stand out to predators, but in my brain I’m also like well if someone attacks me, I have a stick to hit them with, so that’s a pro. [Zoe and Liel laugh].
L: I think that all the time about my walking stick, [Zoe laughs], I’m like – great weapon.
Z: Honestly I don’t know what to do that could help it but I think at least talking about it and recognising this is a bigger problem than what we think it is.
L: Absolutely. Thank you so much for sharing Zoe, and I, I’m also sorry, t–so sorry to hear about your experiences, they are horrific, and no-one should ever experience those traumas.
Z: And I think, you know, talking about these attitudes and things that contribute to this, is very important, like you know, tackling misogyny and you know, not just, you know, the thing like not all men, but no, not all men, obviously, but enough that it’s a very very very big problem, and like if you’re not harassing or assaulting people, that’s that’s that’s great, that shouldn’t be applauded that should just be being a human, but, you know you have to recognise that you’re a part of a structure that does, you know, have these impacts.
L: I agree. Now with all of that I’m so, I just feel so enriched by our conversation and I would really like to hear from you Zoe, about what does intersectionality mean to you?
Z: So I guess intersectionality, as I said, it’s not something I necessarily considered impacted me, and I think that’s something that a lot of people probably experience, like you don’t realise that you’re part of these things and I kind of think that might be intentional, because it’s the privileged parties who benefit from that, um, like there’s a lot of benefits to recognising your intersectionality and the things that impact you and, you know, the structures that all combine together to create all these different problems. Um, you know, if we don’t realise that, we can’t change it, so, um, you know, even just talking about it, and thinking about it, and recognising it has such huge impacts and you know, the fact that I didn’t realise I was disabled for so long, despite having it my whole life and being affected by it by whole life, you know. You really don’t think about it until someone unlocks that box and you’re like oh.
L: Oh before we go, can you share, where can people find you?
Z: Well I have a website which lists all my information and the work I’ve done, um, so that’s www.zoesimmons.com.au, um, I’m also on Twitter, @itbeginswithz, I’m on Instagram @somethingbeginningwithz, and I have Facebook which is I think Zoe Simmons journalist, and LinkedIn, so like any of those work, but um, if you just Google Zoe Simmons journalist, I should come up, or at least my website should.
L: Thank you Zoe [theme music plays]. And we’ll put all of those links in the show notes, so people can just go down and click on them right now and find you, support your work, and get in touch. Thank you so much Zoe for coming to Unmarginalised, it was such a pleasure to talk to you today.
Z: Woo, thank you.
L: Before we go, a grateful thanks to the City of Melbourne Arts Grant 2022 for supporting this episode and the entire second season of the (Un)marginalised podcast. I would also like to respectively acknowledge the traditional owners of the land of which this episode was produced, the Boon Wurroung people of the Kulin Nation, and pay my respect to their elders past, present, and emerging. As we tell our stories, I want to highlights the traditional owners of this land have been storytellers for generations. If you enjoyed or learned something from the episode, please rate, review, and share it with a curious person in your life.
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6th November 2022: S2, E3 with Jess Kapuscinski-Evans:
Theme music
Liel (L): Shalom everybody. I’m Liel K Bridgford. This is (Un)marginalised. Before we jump in, please note that the following episode contains discussions about ableism. So please take care as you listen and check out our show notes for support options.
L:This week on the show, I have Jess Kapuscinski-Evans. Jess is a theatre maker, sings with the “Crip folk” trio the Bearbrass Asylum Orchestra, and recently formed the Waiting Room Arts Company, which commissions work in a range of disciplines by emerging artists. Jess won a Green Room Award for her role in A Normal Child. And in her writing, she enjoys playing with existing texts, music, and other pop culture references. Welcome, Jess.
Jess (J): Hi [laughs]
L: So Jess can you start by telling us about kind of what aspects of intersectionality do you navigate?
J: Ooo, okay, so when I, when I do public gigs, now I, and especially because this is an audio format, um, I describe myself as a smallish woman in a large wheelchair. And I also describe myself as quad and anxious, um, which is kind of like a shorthand for my day to day experiences without giving people my full medical history. My political view about that is that, that sort of stuff is between me and my doctor. [Jess laughs]. Whereas, you know, some people like to shout it from the rooftops, what conditions they have, and blah, blah, blah. So that’s an ongoing thing in disability spaces. Um, and then I, I also um identify as queer, and I guess, yeah, most of my artistic stuff has a, definitely has a disability connection. And then a lot of the time but not always, has a queer connection. Yeah.
L: And do you have a feeling of when you first kind of realised you sort of belong to all these groups?
J: So, I should also say, again, because this is an audio format, I have cisgendered privilege and white privilege as well, which I’ve only just sort of started to kind of come into, but I guess I, what I can share about my disability is that I became disabled when I was 18 months old. So there’s so there’s this funny photograph that my parents have of me walking, and I have blonde hair, um and so the joke is that that’s not me. [Jess laughs]
L: Yeah.
J: I have no memory of being anything other than a quad woman. Um, so, so I’ve known my whole life, that I was disabled, and I suppose, quote, unquote, different from a lot of the population. Especially because I was, so I was fortunate enough to go to mainstream schooling, and that was good for my education, but I was, to use this sort of funny expression, I was a lot of the time, the only crip in the village. [Jess laughs]. So I always knew that. And then I think I had my first crush on a lady when I was about 13. So I think I’ve always known that I was queer, but I’ve had, um, I suppose peaks and troughs of like, expressing that identity and then in practice, also I’m discovering that there are a few obstacles to being a full member of the queer community if you have the, um, extended disabilities that I have. So that’s, that’s kind of my new adventure [Jess laughs].
L: And I was wondering about that, because I read an interview that you’ve done a few years back and you mentioned that a lot of queer spaces aren’t wheelchair accessible as one of the examples and I was wondering, you know, has that sort of changed in recent years? Um, or you know, how, how do you find that?
J: Yeah, so, it depends, I suppose what you mean by a queer space. So If I find that a lot of, for example, theatre shows, or, um, you know, artistic output by openly queer people, um tends to be in accessible venues. Um, but then if you’re talking about things like sex on premises type places, or some queer only nightclubs, they have steps, or like, so there’s one venue, which has a ramp to get into the ground floor part. But then the rest of the venue is steps only. And I mean, it’s, it’s kind of it’s not the queer community’s fault, per se, because renovations to old buildings are expensive, and the government, um, is yet to assist with that in any way. And definitely, I think, what I experience when I go to queer events that are physically accessible, certainly, again, I’m the only one with an obvious disability in that audience, or whatever.
L: And is there anything that you kind of think you would like people to know about what it means for you belonging to all these different communities and having this, you know, being multiply marginalised I guess?
J: Definitely, in general, I think there’s a problem with folk who are marginalised where it’s like, because you’re marginalised, you spend all your time and energy fighting for your immediate needs, um. Or, or like, sort of, by extension, I spend the bulk of my time thinking about disability stuff. And I’ve only just now gone on a, but I need to be thinking about all the aspects of my identity. I need to assess how to engage with communities whose experience are not mine, so trans folk, migrant refugee folk, Indigenous folk, all this kind of stuff, um. I think it requires people who are, who might only have one marginal identity, if they have the energy and brain space to think how they can advocate for somebody else. You know, obviously, [with] meaningful dialogue and stuff because, you know, sometimes, like, allies are good, but they need to know, when they’re doing the right thing. And when they’re actually just making shit worse.
L: [Liel laughs] Yep. And um, I hope that things like this podcast will help people figure out ways to do that. And if they are, like you say, marginalised only in one way, or maybe two ways that are different. We can sort of come together, um, hopefully, to kind of create improvements. And I guess you mentioned before about how disability is almost always a part of your art practice, and sometimes being queer as well. Can you tell us about your art practice a little bit? What do you do? What do you love?
J: I usually tell people that I have a love of dragons and explosions. [Jess laughs]. And like, I firstly come from a place of pop culture like that. But kind of taking those things from film, TV, novels, and going well, what would happen if I put that on the stage? What would that look like? I think that’s a huge part of my practice. And then, and then the next sort of layer on top of that is, especially when I’m writing fiction is what would it look like if this character from Harry Potter was, in fact, a character who was clearly autistic or blind or whatever? [Jess laughs] Yeah. And so that’s, that’s kind of how I write fiction and then I do a bit of poetry. And that’s very much I suppose, based on my, my lived experiences. Um. When I write poetry, I’m always thinking to write it in language that is not too flowery, for lack of a better word. So that it’s accessible to somebody who maybe has never read a poem before in their life, or never heard a poem before. And then my band. So most of the stuff we’ve written is about being queer and disabled. And we do, so some of our stuff we wrote, and then some of our stuff, we’ve appropriated songs by white men.
L: Yep.
J: Same thing. What does it look like if it’s sung by a woman with an obvious physical disability?
L: I love that. And I haven’t heard you. I’ve heard your poetry, but I haven’t heard any of your band work. So I would love to experience that one day, that will be amazing.
J: If you look at the band website now. It’s a guy called Tim Hackett, who was the guitarist, but he’s left. And so now we’re actually an all-girl group, which is super cool, yeah.
L: and I’ve, I mean, thank you for sharing about your art practice. I love how you describe your writing fiction and creating kind of theatre. What is, and also I don’t know if you feel that, but I mean, when I read your work, I feel a lot of humour and sarcasm.
J: Yeah.
L: I mean, I really enjoy that. I mean, are you happy for me to read? There’s a par- There’s an excerpt from Spaced that you published in 2018. On the Waiting Room Art Company’s website, and are you happy for me to read a little bit from there?
J: Yeah, yeah.
L: Here we go. ‘You can be a noddy, and an able bod if you really try. Just take some uppers and soldier on. It’s good to have your friends around you even if all you do together is sit in silence. If you just move your limbs that way and your head that way no one will notice. You’ll be as normal as possible. As functional as possible. There! You look just like a regular person. Especially if I Photoshop out the control box on your left and the head rest behind your head. If I do a few touch ups I can get rid of those bags under your eyes’. Jess, can you tell us about that?
J: Yeah, um, so Okay, so Spaced. So Liel was involved in the first kind of proper presentation of Spaced. So it was a it was a thing around, um, I guess, trying to discuss, um, similarities and differences between folks with physical impairments, people who are Deaf, and people with psychosocial disabilities, like anxiety, depression, but obviously, more than that, um. Based on my experience of being, like I said, both quad and anxious and sort of realising that there was this divide, where, um, people with physical impairments don’t always include people with, um, psychosocial stuff, um, in disability spaces. And then similarly, people with psychosocial impairments don’t, uh, speak publicly about broader disability issues. So it was my way of trying to bring those communities together, I suppose. And that poem was kind of about, I mean, it came from this thing of how they Photoshop people in magazines, um, but I guess what I was trying to say was about how, um, I used to try to hide various things, but also, I think there’s a tendency for lots of folks with disabilities to be as kind of, um, hidden or inconspicuous as possible. And that actually, that does more damage than, you know. Just I think, what is it Macy Gray says, like, letting your fleet freak flags fly? Oh, that’s a mouthful. [Liel and Jess laugh]
L: Definitely. And I think the that kind of, um, passage or poem is definitely very relatable because absolutely, so many people experience that, of the feeling of needing to hide, and, you know, I’ve experienced that a lot, um, growing up, and it’s something that’s very difficult to step out of, I guess or change because, I mean, I’ve explicitly been told growing up to hide my leg, you know, and that’s not even considering all the little ways that we get told that implicitly. And what do you think is the role of I guess humour in your art? Do you kind of use it in a, um, conscious way? Or does it just kind of come out? Or what? You know, what’s that like?
J: A little bit of both. I um, I do feel like I tell people that humour is my default setting, um and that sometimes it gets me into trouble. [Jess laughs] Because I make inappropriate jokes, but also, um, so there was a very famous, I think it was a PhD thesis written many years ago, called Laughing at the Disabled. So it was basically about a film that was a comedy, with actors with disabilities, and characters with disabilities. And basically, it was sort of talking about how it’s okay to laugh at and with us in certain contexts, kind of the same as you would with any other person, rather than feeling like oh, you know, disability must be taken seriously. And isn’t it tragic that Jess is in a wheelchair and stuff like that? So I, I think, so I used to write exclusively more comic stuff. Then I kind of realised that actually, that ignores or brushes over some of the things that need to be spoken. So now I use the Star Wars analogy to try and balance the dark and the light side of the Force [Jess chuckles], whenever I write
L: That’s lovely. I also have, kind of read again, some of the poems from Spaced and one of them that really stood out to me was the first one that was actually in the zine that was published in, was it 2021 that we did that?
J: Yeah
L: Yeah, last year. And I think the poem is called The Doctor Birth Birthed Me, is that the name of the poem?
J: Yeah.
L: Are you okay if I? Or would you like to read the first stanza?
J: Oh no, you can read it
L: I can read it, okay. ‘The doctor birthed me. And all was well, till I was pronounced disabled. No matter the jargon, no matter the word. I’d now be stuck with a label.’ Jess, for me, when I read this poem, and this is obviously just the first stanza of it, I get that feeling of being unheard. Um, which is so relatable as a disabled kind of female, I guess, especially. What do you think is the role of art in kind of creating opportunities for us to be heard as people who are multiply-marginalised? You know, in a society that often doesn’t allow that?
J: So I think I kind of keep changing my mind about this, um, as I go through my writing, so I used to be like, yes, art can change the world. And now, I reckon, actually, art by itself, is not enough, I would say, um, which is why I’d started doing some, quote, unquote, Activism with a capital A [Jess chuckles]. I think certainly, the reason I started creating poetry and theatre and stuff, was sort of a way of venting, like, um, art therapy, but without calling it that [Jess chuckles].
L: Yeah.
J: Um, and, and that continues to be an aspect of how I work, I suppose. Yeah, like, I think if you, if there’s no other space, that you can be heard, then at least you can, you know, put yourself on YouTube or you know, something, um, and maybe someone will listen. But I think um, I also have observed that more practically, people who are so marginalised, that, again, they’re just fighting for their sort of right to exist almost, don’t have the money or the time to actually invest in being an artist. So I actually think that we have a long way to go in kind of in the arts land, especially to achieving a more representative kind of landscape.
L: And I definitely agree with that. I think even going through and trying to find people to interview for this season, you know, I really want to find people that – I want it to be a diverse season and an interesting season. And I want to be able to give people voices, especially people that don’t have that platform on a regular basis, but it’s kind of difficult to reach sometimes. And there’s kind of the disconnect between what’s happening [theme music playing] and some, a lot of people absolutely. [pause] And I really enjoyed that description of how, you know, you just kind of stepped into or moved towards, like, the activism side of things. What’s been like, you know, the activism with a capital A?
J: So well, it’s very early days yet, but essentially, my, my kind of main interest at the moment is around, um, more public transport and accessible public transport, and kind of making it a viable alternative to driving a car for as many people as possible. So I guess I, my, one of my new things is that I’ve been thinking about kind of the intersection between disability kind of issues and environment stuff, um, yeah. And I think, for me, that’s the transport thing. And then also housing, you know, how can we build affordable housing that is also accessible and environmentally friendly?
L: I really love to see the kind of intersection or the overlap between activism and art, because I think so many. I mean, from my experience, anyway, obviously, it’s not generalisation. But a lot of artists have these kinds of big questions in mind, as we’re creating whatever art we’re creating, or as we’re just thinking about creating those things are in the back of our mind, or at the very front of our mind, depending on what’s happening in our lives. So thank you for all that work Jess. Very important. And I’m wondering if we can talk about the theatre a little bit, you know, you mentioned a bit a little bit of the process of why how you imagine it, how it works. But can you talk about what’s drawn you to it? I guess, initially. And also, I’m really curious about what it’s like to be in that industry, because as you said before, about, you know, going to like a theatre show, for example, can be quite inaccessible. And I know that even when I kind of go to performing even just spoken word, um, venues, they are often inaccessible. So what’s it like in terms of accessibility and inclusion in those spaces?
J: Yeah so because I work a little bit across different art forms, I get a little sneaky peek into each one. Um, so a lot of theatre venues have at least some, if not really good access for wheelchairs, whereas lot of live music venues, and as you mentioned, spoken word venues have zero access. So, um, it’s, it’s a very, um, big kind of mixture, I suppose. Um, and then, mostly, I think, where the intervention needs to be is like, yes, I’ve spoke, like, we know about the thing of like, I would like to see disabled characters cast and disabled actors, but I think the intervention needs to be more around, wow do we design a theatre? And then also, I think, we need to have performances, I mean, works that are when they’re written, but then also when they begin the production process, take into consideration a whole bunch of access techniques, so that like, for example, so that there’s not just one Auslan night, but wouldn’t it be great if every performance was, had an Auslan version or something, you know, so I think you know, and some of these things are harder than others. But I feel like if the arts was actually properly funded [haha laugh] we would do some of that.
L: And I think when I was reading through some of your writing for one of your theatre productions, there was in the writing, there was kind of often mentions of the Auslan interpreter as a part of that. That seems like you’ve written that in, in the process from the start, is that right?
J: Yeah, yeah. So that’s, um, that’s Murder she Dictated. It’s, I suppose, thinking about a quadriplegic woman at the centre of a murder mystery. Um, and so with my theatre work, where possible, I tried to do it as a devised, a group devised project. Cause I find it very hard to sit still by myself in a room and write, um I much prefer to, um write with other people. So we had a Deaf writer/performer, and corresponding Auslan interpreter that we worked into the show.
L: That’s beautiful. And I mean, people might not realise some of the Spaced. I mean, the project that was happening last year, was there was very much that process of creating and writing together, which I found so rich, and, um, just really meaningful. I don’t know, there was something really special about that just sitting together on Zoom. But still, it was together and knowing that you and the other artists there were writing at the same time or thinking at the same time, at least as me was, I don’t know, kind of made my brain tick in a different way. And what about Murder she Dictated? Is that something that people can go and watch? Or what’s the kind of, where is that at?
J: So the short answer is, I have no idea, um.
L: Okay. [Liel laughs]
J: The long answer is, I’m planning to finish the script, um, by the end of this year, and then then we’ll be looking at sort of presentation opportunities. One feature of the Waiting Room Arts Company as well, is that we’re hoping to have a kind of live component and an online or take home component for each project. Um, for Spaced, that meant the zine. But we’re gonna look into things like having a pay per view system for, you know, performances and stuff, as well as this measure for, um, people who, even before COVID couldn’t leave the house.
L: And that’s a great, definitely a great option. What do you feel, you know, what would you like to see, as we’re kind of emerging from, I guess, a lot of restrictions? What would you like to see happening across? You know, the art sector in terms of in real life, online, accessibility? What would you kind of in an ideal world? What would you like, love to see?
J: So I guess, um, you’ll notice on my description of Waiting Room Arts Company that I define what an emerging artist is. Um, and this is a this is hot property in in arts land, because, um, I actually have stopped calling myself an emerging artist, I probably would now say I’m, early to mid career. Reason for that is partly the green, Green Room award. Um, because I, um, my observation is that there are people working in the industry, who have been working for many, many years, and still call themselves emerging. And I think the reason for this is because they know that that’s how they’ll get funding. And I think that’s not a sustainable way of working, nor is it fair to say someone who is, you know, a uni student or, you know, just fresh out of high school, and wanting to try and get a grant, but competing with all these kind of, quote unquote, elders, right. Not that elders shouldn’t be funded, but it’s, it’s a question of, by the time you’ve been working for a certain amount of time, you have connections, you also know how the industry works. You also know how to write a grant application, [Jess clears throat]. And so I think we need to reassess more generally the kind of categories of funding. And then I guess the reason I, um, put Waiting Room as a commissioning company, is that I think that the, the thing of actors with disabilities playing characters with disabilities, it’s only really one part of the solution that it needs to happen at the level of, you know, the people who are in charge of creation. So whether it’s directors, writers, curators, you know, all these kinds of positions need to be people with disabilities, for there to be meaningful change. Ah, and the same with other marginalised people, too, although I will say there’s a lot of gay white men already, but you know, so bring on the lesbians [Jess and Liel laugh].
L: Definitely.
J: I think those are the main ones. And also, I think, I would like to see online stuff beyond just Netflix, and, you know, all the streaming services, even if we, we never have another lockdown again, because I think that just opens things up for so many people. Yeah.
L: And unfortunately we have seen that being dropped already, in a lot of, um, events. A lot of events have now said they’re only doing in-person and wouldn’t record and wouldn’t stream online which is such a shame.
J: But also sometimes like, um, you know, with, depending on the project, it’s nice to have a, a physical object, that you can take away, so if you go and see an art exhibition, can you buy a painting and then have it in your home or something like that? So, I think there’s something deeply sort of, um, personal and lovely about that way of working as well.
L: I mean obviously people can’t see you, but you’ve, kind of leaned back a little bit before. I guess, I’m wondering if that’s something you want to share in terms of, how your, I mean you mentioned your disability kind of obviously influencing your art, but is there any way, any other ways it sort of physically can be unexpected, you know unexpected things can happen, and how that influenced your art, your practice, maybe, I mean, yeah anything like that you’d like to share?
J: So I guess like, um, this is not the case for everyone who’s quad, but for me, I have a lot of things where I feel unwell or just tired. So, um one of the things is that when I write, I often write, um, short, bite-sized pieces at a time. Um, so I, I always like to explain to people, that when you go to drama school or any of those kind of, institutions, there’s the expectation that you’ll work 10 hours a day, 12 days a week, blah blah blah. And that model is not, definitely not sustainable for me, but I would argue that it’s not a model that’s really sustainable for anyone. Um, so part of it is going, okay today I will just write one poem, or I will just focus on two scenes of a play or something like that, you know. Um, and I guess, I guess like with my music, it’s been an ongoing thing, because I have limited lung capacity, um, so I’m in the wrong profession is what I— [Liel laughs]. Um, how to make the most out of my body, um, in a way that, so it sounds good, but I don’t kill myself in the process.
L: Thank you for sharing that, I think that’s a really good point, and I think that a lot of the time, there’s expect- there’s particular expectations around, and I spoke about that in my last interview with Renay Barker-Mulholland as well, particular expectations about what, art should look like or be like, and I think sometimes, even that idea of you having to practice everyday for a particular amount of time, is really unrealistic for a lot of people, myself included. And it’s really important to acknowledge that and for people on the other side of it, you know, reading grant applications, or commissioning, or creating a lineup for something, to understand that and to, for that not to be a barrier. And we’ve touched on it in different ways, but if there’s something that you haven’t said about what does intersectionality mean to you?
J: Put it this way, my, my, latest thought process is around, um, so being a queer woman with, um, the level of disability that I have, um, you can make premises accessible and that’s fairly easy, but um, the intervention that I don’t have the answer to, is, um, is other queer woman finding me desirable, you know. I think, um society, kind of, um, views the disabled body, as kind of ugly, and all these sorts of things, um, so I think that’s, that’s the, that’s where I’m feeling the intersectionality of my different identities, and then also just like, having to sort of re-learn my history, you know, um, er, key disabled folk from the past, but then also, you know, um, you know, feminist history, queer history, all these things that I should know by now, because it’s been a part of my identity for a long time. But I’m only just starting to now, read those texts, you know, so. Yeah. Cause I think you have to know where you come from in order to know where you’re going.
L: I agree. Now the last thing is, where can people find you? And how can people support your work, you know all of our listeners should go right now to do that, so tell us what’s the best way to do it.
J: Okay so, um, maybe Liel, the simplest thing is if I send you websites and YouTube, um, but basically The Waiting Room Arts Company, and the Bearbrass Asylum Orchestra has a website and YouTube, um, and the Waiting Room Arts Company website has, I tried to, ah, as often as possible, post excerpts of, whatever the Company is working on, um, on, on that website. And then, um, pretty soon I hope to share work that’s, say been done by, artists who might have worked with the Company, but, but work that they’ve done elsewhere in the world, just to get a sense of, you know, who, who we work with, I support. Um, and then, yeah, and then Bearbrass, like I said, has a YouTube, and we’re hoping to put some more stuff there, and I’ve been converted to TikTok lately.
[Theme music starts]
L: Oh, have you?
J: Yes.
L: Okay, so I will put all of those links in the show notes for people to just check out, so click on those links and go and find all those fantastic works. Thanks Jess. Thank you so much for coming to Unmarginalised, it was such a pleasure.
J: Thank you.
L: Before we go, a grateful thanks to the City of Melbourne Arts Grant 2022, for supporting this episode and the entire second season of the (Un)marginalised podcast. I would also like to respectfully acknowledge the traditional owners of the land on which this episode was produced, the BoonWurroung people of the Kulin Nation, and pay my respects to their elders past, present and emerging. As we tell our stories, I want to highlight the traditional owners of this land have been storytellers for generations. If you enjoyed or learned something from the episode, please rate, review and share it with a curious person in your life.
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31st October 2022: S2, E2 with Renay Barker-Mulholland – Episode Transcript:
[Theme music]
Liel: Shalom, everybody. I’m Liel K. Bridgford and this is a Ummarginalsed. Before we jump in, please note that the following episode contains discussions about mental health, poverty and ableism. So please take care as you listen and check out our show notes for support options. This week, I have an amazing guest, Renay. Renay Barker-Mulholland Biripi and Daingatti woman who identifies as Black, disabled and a staunch feminist. Did I pronounce everything okay?
Renay: You did. You did wonderfully. Thank you so much.
L: Of course, um, and welcome to and Unmarginalised.
R: I’m very, very happy to be here.
L: So can we start with what intersections of identity do you navigate?
[Theme song fades out].
R: Um, so the one that I’ve lived with the longest is being First Nations person, Aboriginal Indigenous depends on who you’re asking what they identify with. I don’t mind all of the above. But so my mobs are Birpi and Daingatti, which well done on getting them because I know they can be a little bit of a mouthful. So Birpi and Daingatti lands are situated east coast, sort of New South Wales, bit further up from Sydney, not too far. And I call it heaven on earth. But you know, that’s just me. It’s where the mountains meet the ocean. And life is just a bit a little bit more special. For me.
L: Sounds beautiful.
R: Yeah. I mean, I don’t remember when I first knew I’m Aboriginal, it was just a, it was just a thing that I was, it’s kind of like, when you come to realise you’re a person. And then as a person, I was an Aboriginal person. So that is the identity, the identity that I have lived with the longest. Um, I’m disabled. So I define them as being mobility limiting, um and I also suffer chronic pain, um and I also have a psychosocial illnesses. So what’s probably more commonly referred to as mental illnesses, so major depression, and um, anxiety. And I think, um, those identities are really important to recognise, because, you know, being an Aboriginal person in a wheelchair quite often, those are the things that people see first. And, um, I think I want to acknowledge just how disabling it can be to have a mental illness sometimes. So um yeah, I probably started identifying as disabled a few years ago now, um. But, yeah, after a long, long stretch to get there, I finally got my diagnosises. And then that led me down the path to identifying, and a feminist oh, gosh, I’ve been a feminist my whole life, I think.
L: Yeah
R: From I always say that Lisa Simpson was my gateway into feminism, because she was, she was the most accessible feminist to me, she was the one that was the outcast in her family that was always saying, you know, hang on, what about this? And isn’t that questionable? And shouldn’t we be thinking about that? So, so yeah, that’s, that’s sort of where I see it very far to the left.
L: And I guess I definitely with the left and right, I will definitely want to get to that. But before we do, I wondered if you can kind of give us you know, for the listeners who may not kind of know much about what intersectionality means, or how it can affect someone’s life. Can you kind of explain in maybe with an example or something? How having those different identities and your kind of unique identity with all of those communities you belong to, how does that affect your life?
R: Intersectionality I see, um. So I kind of see, when you are born, and you’re given a life, you kind of have I use a quilt as a metaphor, a blanket. And some people just have one or two patches on that quilt, and other people have, you know, an entire space filled with different patches, and some of them overlap, and some of them are bigger than others. And that kind of, um, is a way to have a visual representation of how these levels of what we call intersectionality fit in with each other. And it doesn’t mean that one blanket is is more beautiful than the other it just means different things, you know, um, it means different layers is the way that I put it. Um and so the second part of your question was… how they impact me. You know, the first thing that comes to mind when I want to answer that question is how lucky I am. Because I, I have had the pleasure of knowing and spending time with such a different range of people. Um, you know, from someone who is experiencing, um, they might not have secure housing, and um, they feel comfortable chatting with me, and I might meet them for a couple of minutes on public transport or, you know, having an identity, that means I feel comfortable talking to everyone from the person who might not have a home to the Prime Minister, I’d quite happily talk to the Prime Minister. In fact, I’d probably say quite a few things to any politician that would listen to me. But so I feel like that intersectionality has given me the chance to have not exposure, but get a glimpse into the life of so many different kinds of people. Um, so that’s the first thing that it brings me. Um, unfortunately, because of the society and the kind of way that our society is structured at the moment, that means that I don’t always get not what’s fair, what’s equitable. So, for a long time, even I was not sure what the difference between equality and equity is. Um, and I kind of see it, as you know, equality being everyone gets the same, and equity being, everyone gets what they need. So I don’t want to say I’m at the bottom of the ladder. [Renay laughs]. But I’m pretty far down on the pecking order in terms of that. And so that has meant that for the majority of my life, I’ve been poor, not—physically poor, and emotionally rich. But you know, it’s a, I think it’s a really important thing to recognise how, how much lack of resources and poverty can impact on someone’s life. So.
L: Absolutely. And I, for those listeners who missed maybe season one I actually talked with one of my guests, Julie was talking about her experience as a disabled girl who grew up in a poor family and how that really impacted her entire journey because she didn’t have access to medical treatments,
R: Yep
L: or that equipment that she might have otherwise have had. Now, can you tell us about your art practice? What do you do?
R: I like to call myself a black of all trades because I, I [Renay laughs] can’t make I don’t like committing to one particular thing, probably one thing that I have a very, very great love for, is creating clothing or costumes, or, I don’t know, I don’t like calling myself a sewer because it looks like I’m calling myself a sewer. When you just write it online. Um, you know, the big passion I have for clothing, it comes from a desire to express who I am on the inside on the outside. So when I put together an outfit, it’s not you know, what’s functional, or, I mean, that does impact it too. But it’s it’s coming from an expressive part of me so, but I also love painting. Painting, I’ve done it in secret for a long time.
L: Why in secret?
R: Well, for the first little while, it’s probably because more of a felt more secretive, because it was only something I got to do every now and again. So because of again, because of poverty, I didn’t get to sort of go to the after school art classes or do those things. Um. And then when I was at school, and I was doing all these, you know, I had access to all these different resources. I would do a sculpture one day, and then a pencil drawing the next day. And I felt the the common thread between all my work was me. It didn’t need to be a style or a colour or whatever it is. And so when I was doing all these different, different artworks and different styles, I had a an art teacher that said something to me, that, um, impacted me for gosh, the next 20 years of my life or almost 20 years. When I think back to it, I think obviously the young girl that heard this was in a very bad place. And I I can see that, but for a long time it stopped me calling myself an artist because he said you’re never going to be a good one if you don’t pick a style and stick with it.
L: That’s horrible.
R: Yes, and it was it was somebody that I actually really respected at the time too. It was someone that, I didn’t have a lot of adults in my life that were stable and so to have one that was stable, so something to me that I felt, you know, it never been a problem up until then I could do, you know, make an outfit one day and then paint the next day, it was just like I said, that commonality was me. Um. And so when he told me I was like, Oh, what, like, what? [Renay laughs] What? Does that mean I’m not allowed to call myself an artist because I, you know, at the end of year art school, sorry, end of year art show, I don’t have six paintings in a series that reflect through each of them. Um, and, you know, looking back now, I think that’s a product of my environment, I was a product of my environment, I didn’t have that stability. So I couldn’t produce in that. I couldn’t produce artworks that were all the same, because I was coming from such, um, turbulence. And so yeah, when he told me this it, it may, it took away my confidence in calling myself an artist.
L: Of course, absolutely, I think it’s really important to acknowledge as well that your output as an artist was different because of what you were going through. And that makes sense, but also to acknowledge that, that doesn’t make you less of an artist. And I think I was actually going to talk to you about this, the sense of, you know, all these rules around what art looks like and should look like. And I think that those can really act as gatekeepers,
R: Yeah
L: And that is just a perfect example of that, you know, I see that in poetry so much, you know, if it doesn’t kind of subscribe to a certain way of writing and presenting then it’s not considered or people don’t see it as poetry. And I think that’s from my perspective, I feel that that those are really gatekeeping kind of methods.
R: And that, you know, really interesting in that it happens in so many communities because for a long while, that’s why I didn’t identify as disabled, because I thought no, I’m not. I’m not that. I’m not what I’m seeing represented. And yeah, so so, gatekeep-y. gatekeeping, for anybody listening, who maybe doesn’t know what gatekeeping is, it’s like people build a stereotype of what, you know, an artist should be. An artist should be a person who paints paintings, and, you know, does sculpture, whereas an artist can be someone who creates an outfit, for example. So there’s that, preventing someone from identifying because they don’t fit a particular set of rules, or actions or attributes that they that someone thinks they should, should have. And yes, it’s, it’s really damaging, because I, um. When people gatekeep and keep others from a community, people lose that support that a community can bring.
L: And also from the other hand, I think that we also lose the richness of what our art culture can look like, and what our communities can look like, because we don’t value that art made by people who are left out of those kinds of gates or those rules. And often, those people are people from multiple kind of minorities, you know, who navigate intersectionality. So, I’m curious, you know, we talked about poetry for the fir- when we met in real life, we talked about poetry
R: Yes
L: and you identify as a poet and so am I, and, you know, I was wondering, when you started writing poetry, and when you actually started calling yourself a poet?
R: Well, see that’s, that was like, the, the final frontier for me. Because I feel like poets are devalued, so much in our society. You know, and especially in the age of the internet, where access to people’s words is so easy. So that value of of expression that comes through, as you know, as a poet, it’s I think people devalue it. And I think that’s probably why it took me the longest, um, to identify the poet. It’s probably only in the last, like, two years, maybe two or three years. And so what am I? I’m 30, So I wrote my first poem when I was about seven, if I do my math correctly, seven or eight.
L: Yeah.
R: I think my mom held on to it, which was really lovely. When after, after she passed, I was going through things and I found it and thought, Oh, this is, you know, I haven’t seen this in 25 years.
L: Wow
R: So yeah, it took me a good 25 years to identify from writing that first poem. I think it was about my family and how much I love them or something like that. But from that point, it took me a very long time to identify as a poet and a writer as well.
L: Yeah, I had the same experience I wrote my first poem when I probably when I first learned to write, and then yeah only in the last few years, I’ve started identifying as a poet. And definitely, I think a part of it is because of the poetry that I was exposed to was always very narrow definition of what poetry is and can be. And only the last few years, I’ve been exposed to all kinds of poetry, um, and started writing with so much more freedom,
R: Yeah
L: which is such an amazing feeling, very big relief. And with that, I’m wondering if I can there’s one of your poems that I love it and it’s called, I Want To Buy a Ford Capri. [Renay laughs]. And I just loved it. But I’m wondering if you don’t mind me reading the last three stanzas. Is that okay?
R: Absolutely. Go for it.
L: Okay. Ahh! There it is, freedom, I desire freedom. I sat and typed and pondered, yes, I enjoy the nice things about the car. But it’s the freedom, the freedom, it’s not suitable to carry a wheelchair. It’s not right for baby seats, it’s right to take me where I want to go, on my own to where I need. So I want to buy a Ford Capri and drive it to the beach, stay and watch the sunset, and then get fish and chips for tea. I want to touch the ocean with my feet, and feel the space around me. And if I drive my Ford Capri, I don’t have to say please. [mouse clicking]. I just love that. Such a powerful ending.
R: It’s that that’s so cool. I’ve never heard anybody else read my poetry. And so to hear my words reflected through somebody else. That’s really Oh, it’s really confronting in a good way. But it’s like, wow [Liel laughs]. I know exactly where it comes from, you know, and that’s, and that, that line that you started with, Ah, there it is. I had written a poem. And I was, it’s sometimes it’s so hard to put into words what it means, what the poem is about. And then it came to me like a light bulb moment, that was what I was drea-, because I don’t know if you’ve ever seen a Ford Capri. But they’re, um, they look like Mario Kart cars. And you know, I’d spent all night dreaming about putting little, you know, lace details on it and doing the seats up and thinking about it and thinking about why I why I wanted this car. And then it was like, aha, I you know, I’ve excised that demon because well, whatever that was, because I finally got to the moment of that, that’s where it is. And I think that’s why poetry is such an important, um an important thing, because it can for me, it can be almost stream of consciousness of writing. And then you know, to be able to have someone’s all not unfiltered, but free flowing thought and get that little. And I mean, I hope that people can understand when they read that last little part, what, imagine themselves going to the beach and imagine the freedom of what it means to have that and be able to do that. Yeah.
[Theme song plays in background]
L: definitely. And I love how accessible your poetry is. We haven’t talked about it, actually before in a lot of details, but we actually both contributors to the anthology that was recently published by Black Inc called, We’ve Got This, and that’s about stories by Disabled Parents. That’s, part of the title. And I’m wondering, I’ve been as I’ve been reading it, I’ve been reflecting on how being a parent can influence our art and our writing. And I’ve been kind of pondering, you know, how is that for you? The experience of parenting and creating art, what is that? How do they go together? If at all? How do they influence each other?
R: It’s a great question. Um.
L: Thank you.
R: For a long time, I wanted to be a parent. From a very young age, I knew I wanted to be a parent. So I think in some ways before I became a parent, it was reflected. I was that sort of desire was reflected in my work, um. And then they’re such, they’re fountains of inspiration. I think it’s just firstly, before I go off on that tangent, um, We’ve Got This is reading it has been such an experience because obviously, you know, um, I kind of knew a little bit about your story and some other people’s stories, but, um, seeing the commonality between, um, you know, because I was a parent before I identified as disabled,
L: Same.
R: and, um, then that difference in that shifting of understanding, um, has been amazing. So I’m so I’m so proud to be in this book, I will tell everybody that will listen. You know, my children are my, my, the thing I love to talk about the most. So and you know, initially they do become this great fountain of inspiration, because they’re, is there anything more beautiful than looking at a child who’s asleep in your arms? And I think it’s the greatest privilege in the world to be able to hold such a fragile and unprotected being and be be a safe space for them. Like, it’s if you could bottle that feeling, I’m sure we could solve a lot of the world’s problems. But so you know, they become this fountain of inspiration. But now, now, um, that my eldest child is getting older, he just turned 14. I’m finding myself wanting to collaborate with them on artistic ventures, because, um, I just think they’re a really cool person. [Renay laughs].
L: Yeah.
R: you know, being able to take that next step to go, Hey, I’ve got this idea, um, you know, how about we talk about it? And how about we explore that and, you know, this, it’s a kind of a relationship that you can only have with someone that you’ve, not necessarily that you’ve parented, but that you’ve had some really close connection with. And so it’s really nice to have that back and forth of like, not having to explain yourself, or saying, hey, remember that one random time that we did that thing, and then you know, they can remember
L: That’s a very fantastic experience, I can’t wait for my kids to be old enough for that. We do have little collaborations, but you know, my eldest is only, not even four. So our collaborations are a bit of like, just glue everywhere.
R: Yeah.
L: And do you talk to them about kind of intersectionality, or your identities, what it means, any of that?
R: All the time. it’s one thing that I didn’t have any experience about. In terms of intersectionality, I don’t identify as, I identify as cisgendered, and heterosexual. So, you know, I don’t have those other layers of intersectionality, as well. Um, and so being mindful not only to talk about my experience of being disabled, and a woman, but also making sure that they’re aware of intersectionalities that come with other identities as well. So yeah, I talk about. I talk about it with them a lot. And, you know, especially in terms of gender expression, both of my children identify as non-binary, so being able to give them the language to know that they can say that or, you know, being proud in their, their cultural heritage, as well. Yeah, from from the moment they can hear me, I talked to them about it, because, you know, that’s my experience. And I, I want them to know why Mom’s getting upset because the wheelchair doesn’t, you know, I can’t get on this tram because the wheelchair doesn’t fit on it, or I want them to know the reality. But also understand how it impacts our life.
L: And that’s one of the benefits of having, you know, a parent who’s kind of multiply marginalised, you know, having that understanding and expressing that to children. I think there’s no one better to do that, than you. And they are no doubt growing up to become much more kind of open minded and inclusive in their thinking than our generation has ever been.
R: Yeah. It’s mind blowing. There’s one really quick story I have to tell you. When, you know, we played a lot of video games, as a family, we play a lot of video games, and they often have the trope of saving the princess or, you know, the princess needing to be saved. And I overheard a conversation that my big child had when they were about eight or nine. And you know, they were playing with their friends and their friends were saying something about oh, no, we’ve captured the princess and Big leaned in and said, you may have captured her but you will never own her.
L: Ohhh.
R: I had to keep myself from from like, bursting in there and being so proud of him because it was just like, Yes, I’m raising a little feminist. He doesn’t even know.
L: Yeah, that’s very impressive for that age. And I really think we can kind of be leaders in I guess, providing an example of how you can have these conversations with children, because so much of the time, I think in mainstream society and culture, it’s been seen as like, something that we should protect children from, or something like that, these kind of issues, and they’re so important from a young age. So, yeah, I recently bought my kids, this book that has a disabled kid as a protagonist. And it was, it’s kind of started such great conversations together. And I actually use social media for that benefit actually showing my kid kind of pictures of people that look, you know, in, I guess, quote, unquote, different from what they used to seeing on the streets so that they get used to that, and we talk about it in a really kind of open way, which I just absolutely love. Because I didn’t have that growing up.
R: Yes, and to be able to see diversity, um, and to see people’s self-controlled narrative. Well, as much as you can control your narrative on social media, but people’s own expression of that, and own voices. And yeah, going straight to the horse’s mouth, so to speak,
L: Yeah, actually showed my kid the other day, someone, we were talking about people with no hands. And this is a conversation. And I showed him one of the people that I follow, who doesn’t, who has a limb difference in her arms. And um, we talked about, you know, and there was a photo that she kind of posted with, and one of them, she holds a book about disability, with, you know, we kind of one with a hand missing and the other hand, and my, my kid was like, talking about it. And he’s only less than four. And it’s like, why is she happy? [Renay laughs]. What, she’s happy, you know. But those I think, underneath that was maybe he’s kind of kind of slowly thinking about what it means to be disabled and proud and be open to the world and, and be happy, even though your limb might be quote, unquote, missing.
R: It’s, it’s really lovely, um, to know. See their little brains ticking over and thinking, and all those, yeah, I’m such a nerd, all those neural pathways opening up and thinking, you know, what does that really mean? And that’s kind of in terms of disability. That’s, um, one thing that we’ve spoken about with our children, because they have disabilities themselves. I don’t know if they’d identify as disabled yet. But it’s their journey, so it’s not up to me, but letting them know that in our society, there’s a lot of expectation that we want to meet a certain criteria, like, the assumption for happiness is that everyone’s going to have, you know, two legs, two arms, 10 toes, whatever. And that there’s a lot of pressure to try and attain those things or attain as close as possible to those to be happy. Whereas like you say, it’s possible to be happy and have no, you know, have no traditionally framed limbs or, you know, to have a limb difference is the way that I would put it. But the other the flip side of that is sometimes now, like I said, as Big’s getting older, they’re coming to me and saying, but hang on, why, why does the world exist this way? And how can people have let it get to that point? Yeah, that’s when social media comes in handy. And I get out, and I say, Oh, well, this person’s challenging it. And you know, this person is, it’s not all, it’s not all dire.
L: And I’m wondering as well, I was gonna ask you, as you bring up that point, what do you think is the relationship for you, between arts and politics? You know, you’ve actually recently posted something on social media and it read, disabled black woman, I’ve always lived with consequence of public policy. I am political, just by existing. So what is the relationship for you between your art practice, and politics?
R: I—like I said, I’m political just by existing because other people have the majority of control over my life. Um, people who determine how much money I live with, what resources I have. And so any narrative I’m in control of, is political, is me, my chance to say, this is wrong, or this is right, or this is, you know, it’s my chance to put out there what I feel. I don’t, I think art is inherently political, because art is a reflection of society and society is what makes up policy and you know, who is impacted by policy. So I think all those things are inextricably linked. I think you’re definitely only the people who are not impacted by the policies negatively are the people who say that things aren’t political, in my, that’s, in my opinion, um, it’s something that the art reflects. And if we don’t fund the arts in the way that they should be, or if we don’t place importance on the arts in the way, like, like you say, poetry is, you know, the majority of poetry that you get exposed to is very, there’s a lot of it, of one style. And we don’t get exposed to more because, you know, the, I can’t make a living as a poet. And I think that’s one of the problems that the arts needs more supporting in and because what do we learn from poetry that in? Or art in general? What do we learn from art that influences our lives? That changes our mind that makes that connection? You know? Yeah.
L: So as I was going through your stuff I found this, um, one illustration that I came across before, which was kind of, um, an illustration of two hands towards each other and there’s text I think above or on the left, and then under that illustration. And the text read, okay one of the, the text I think at the top, read: respect is free. And underneath it said: so don’t be a fucker.
R: Yeah [Renay laughs].
L: Love that. Because the hands are so, for people that obviously, listeners who can’t see it, the hands are really kind of delicate-looking and they have nail polish on them and then, this, the word, kind of really jumps out at you from the illustration, which I love. Can you tell me about that, like what’s inspiration for that?
R: Um, I have always been fascinated at the juxtaposition between femininity and roughness. And femininity and brashness. And that it seems that, um, society has a hard time combining the two. I can’t be, a woman who wears lace and also says fuck, when in reality, that’s me. I lov — you know I will wear a pink tutu, and swear like a sailor because that’s my expression of me, so, um, it kind of almost leads into the toxic positivity of, you know, everything will be okay, and um, I don’t see colour, or I don’t see disability, or um, that sort of erasure of anything negative. Um, and then yeah, that punch of like, you’re a fucker. Cause that, sometimes in world, you know, I, I don’t consider myself a linguist but I certainly love words and I love using them and telling stories, but sometimes there’s no better word than a swear word. It’s punchy, and it’s so expressive and it’s so universally understood, um, even if you might not know the word, you understand the feeling, um, and so this, this, just—juxtaposition, especially, you know, and I think, I believe one hand is, um, in the illustration, one is a bit darker than the other, so one is darker skinned and one of sort of lighter skinned, um. And yeah, speaks to this narrative of, um, Black women always being angry if they’re outspoken, um, you know, in situations where other people would be perceived as being forward-thinking or assertive, it’s like as soon as it comes out of a Black women, you’re hysterical and, you know, that’s, you’re written off and your anger is written off, um, and I, I love the idea of people having their own definition of what being a fucker is. I just love that so much, it’s it’s something that’s spoken to me since I was a little girl, of you know, wanting to wear lace and florals and very, and just just being this very lou—, cause I’m I’m, I try to tone it down sometimes, but I am a loud person. I am opinionated, I talk a lot and it, I can’t, I can’t separate those two elements, so.
L: They’re part of you and I think that’s such a fantastic, illustration of that, and a really incredible way to kind of, actually, challenge, what it means to be, you. What it means to be a Black disabled woman. And being able to be who you are fully and without that being written off or minimised or, um, just ignored completely or, um, gaslighted.
R: Yeah
L: So, you know, I think that’s a fantastic, kind of ending, that I, this is what I wish for our society, and for you and for all of us who navigate, kind of multiple diverse identities that we can be fully who we are and that being safe, because it’s important to acknowledge that sometimes, um, it’s really unsafe, like you said, um.
R: Yes
L: So hopefully, in spaces like these that we are creating ourselves in between the unsafe places, we can change that.
R: Yes absolutely. I, I mean it’s always good to know, to have on record that feminism doesn’t have to be, subscribed to one particular thing. The great thing about feminism is that you get the choice. Everybody gets the choice and all of those choices are equally valid, so what is their name? Alok? Alok Vaid-Menon? Do you know them?
L: Yes
R: Yes, amazing, amazing poet, and just amazing all-around person, but I saw them talking about how, I mean obviously I’m paraphrasing, but their goal in life is to give everybody the peace of respecting themselves, and, and knowing yeah, knowing their worth. And really knowing their worth, like, and so I think that’s what I, as soon as I heard that, I was like, yeah that’s that’s putting into words exactly what I’m, I’m going for.
L: I love that. But before we go, can you share, um, where people can find you and your work.
R: I, you can go to my website. I have a website. I believe it’s firstnationsfeminist.com
L: It is.
R: Which I should probably double check [Renay laughs]. Thank you. I am doing a couple of speaking gigs, but generally, just, hit me up on Instagram, firstnations_feminist. And hit me up. Or if you want to see me ranting, I do rant on Twitter @fnfeminist. There’s a lot o swears, just as a warning. There’s a lot of swears in the Twitter, so.
[Theme music starts playing]
L: That’s okay. Well we’ll put it all in the show notes as well for people. Thank you so much Renay for coming to (Un)marginalised
R: My pleasure.
L: Before we go, a grateful thanks to the City of Melbourne Arts Grant 2022 for supporting this episode and the entire second season of the (Un)marginalised Podcast. I would also like to respectfully acknowledge the traditional owners of the land on which this episode was produced, the Boon Wurroung people of the Kulin Nation, and pay my respects to their elders past, present and emerging. As we tell our stories, I want to highlight that traditional owners if this land have been storytellers for generations. If you enjoyed or learned something from the episode, please rate, review and share it with a curious person in your life.
[Theme music fades out].
23rd October 2022: S2, E1 with Sonja Plitt – Episode Transcript:
[Theme music]
Liel (L): Shalom everybody. I’m Liel K. Bridgford and this is (Un)marginalised. Before we jump in, please note that the following episode contains discussions about mental health, the Holocaust, trauma, ableism and transphobia. So please take care as you listen and check out our show notes for support options. Today on the podcast I have Sonja Plitt.
L: Sonja is a queer parent, student of the Associate Degree of Writing and Editing at RMIT and an emerging writer. Their work includes themes on intergenerational trauma, substance dependence, religious oppression, gender, and mental health. Sonja’s writing has been highly commended in the Victorian Premiere Literary Award, shortlisted in the Odyssey House short story competition and published in the Darebin n-SCRIBE magazine. Welcome Sonja.
(Sonja) S: Thank you Liel, lovely to be here. Thanks so much for having me.
L: My pleasure. Your introduction kinda touched on a few of those things, but can you start by telling us what intersections of identity do you navigate?
S: Sure, um, so queer was one that you mentioned. There were a few subheadings under that. So pansexual is one. For people who aren’t familiar with that term, it’s the romantic, emotional or sexual attraction, to people regardless of gender, so it could be, it could be a man, a woman, trans woman, trans man, non-binary person. Gender doesn’t play a role in that that aspect of my attraction. I’m also polyamorous, which is, which again is outside the normal monogamous um, majority. I have, I can have multiple partners. I currently don’t have any, but. Sonja laughs.
L: Yeah fair enough.
S: But yeah, I see love, as sort of a non-ownership style love in, under polyamorous. I’m also non-binary and specifically agender, so I don’t experience having a gender. Also, agnostic. This list goes on, we’ll have to cherrypick which ones we talk about.
[Liel laughs]
S: So agnostic. I also navigate complex trauma that creates, I experience mental distress and I’ve described it in a particular way cause I don’t really like labels, so we can talk about that as well if you like. But that’s, that’s sort of them, um, initial list and yeah we can talk about whichever ones you prefer.
L: Sure. Well thank you for sharing. That is definitely an impressive list [Sonja laughs], and I’m very glad that we can kinda talk about all those things. Um, I’d love to start with maybe more generally, if you can kind of explain how navigating all these intersections kinda of impact your life, you know. Can we start there, with a bit of an explanation of, or some examples, about how that comes about in your life, navigating all those identities?
S: Um, sure. Well it it it is very complicated. I find I have a lot of balls in the air and um, that, I think. Because there are so many intersections that actually impacts my mental wellbeing quite frequently. So, it will elevate, it can elevate my stress levels, so, um. Sort of a sense of generally not fitting in anywhere because there are so many different intersections is something that, um, yeah that really impacts my, my mental health. So I’m just trying to think of, I think of an example. Um. So, um, being queer, I’m part of the LGTBI community, but being polyamorous, for example, most people in the queer community are monogamous
L: Okay
S: so that further marginalises me within a marginalised group and that impacts my mental health and other things. So, um, it can get really complicated.
L: That sense of not fitting in anywhere is something that so many of my guests have described in lots of different ways. And that sense of, kind of being marginalised within a marginalised group can be so complicated, and I’d love to hear about, sort of, I guess how do you handle it then? I mean, you know, it increases your stress, feeling like you’re not fitting in, sort of anywhere, because you’re kind of in the margins and on the margins of the margins, how do you, what helps you to deal with it?
S: I was just actually thinking about, um, the poem that I wrote, “Bearded Lady”, in n-SCRIBE and thinking about, you know, this idea of, I wrote in that about, you know, put your face on, saving face, and um, that it’s an old showbiz trick, and so, cause I used to be in performance, and one of the rituals that, of putting makeup on and you know, presenting a particular appearance. While, you know, that’s, in some ways promoting an ableist idea, you know people want to see everyone looking all shiny and, you know, well presented, it has become a coping mechanism, where I will get up in the morning and I will do that because, um, yeah and that’s sort of complicated too because then people, um, won’t recognise that um, sometimes I’m not okay, but I’m, in this performance mode. But it it does generally help me, um, to cope.
L: Very interesting. But absolutely important to also recognise how the perceptions of what it means to be struggling with mental health or stress or, you know, social stress, like discrimination and marginalisation, how that can be kind of hidden under things like, you know, how we present ourselves. Um, so you mentioned the “Bearded Lady”. Can we talk about, I think you described it to me as a gender epiphany, that you referred to in that poem. Can you talk about that?
S: Yes. Well there’s there’s a lot going on in that poem, um. It is inspired by my late teacher Ania Walwicz, who was an avant-garde poet and an amazing teacher and she spoke a lot about gender. She was a staunch feminist. Not long before she passed and before the lockdown, the Covid lockdowns happened, she was, um, reading some of her work, wearing a beard, at queer poetry events and um, so she would often perform with this beard on, and um, when she passed away, deep in lockdown, um, it was such a shock to me. That shock somehow forced me to really reflect on the idea of performance because she, she wrote a lot about trauma and that idea about performance, that life was a stage, and everything was a performance of sorts. And in, deep in lockdown, when she passed away, I really reflected deeply, on, you know, what am I performing? What, you know, what, what is, you know, about, just deep reflections on life and that actually really contributed to my gender epiphany, how, um, gender is a performance, or a set of roles that we, um, are conditioned, to behave in particular ways. And that was part of what contributed to sort of that unravelling and the epiphany itself, so.
L: I’m sort of wondering if you can then explain to us, you mentioned before, about being queer and the different kinda sub-labels almost, within it, for yourself? And you talked about being, you said two different terms that I think I would love to hear from you about what they mean to you and for people that don’t understand kind of what we’re referring to when you say, um, non-binary and also agender. Um, can you talk about, what the diff-you know, what do the mean to you, those terms, and how do they different, if at all? Are they different?
S: Yeah, so they’re sort of, it’s, they’re semantics, and I often get into debates with other gender diverse people about how these labels should be used. And the way I see it, binaries you know, in terms of gender are male and female and non-binary to me, is anyone who doesn’t fit neatly in to one of those binaries. And being agender, not experiencing or feeling like I have a gender at all, sort of pulls me out of the binaries, which is why I sometimes use the label non-binary.
L: Yep, so you kind of identify with both of those things, but sounds like they’re slightly different, um, for you.
S: I suppose non-binary people will still use, often, I see them adopting elements of, so, dress or hair, hairstyles that are identified with, a particular gender and they’ll sort of blend to, one or the other. And, um, for me, I think more of, I don’t really do that, but I have um, but you know, I have feelings or, around behaviours. So some behaviours, like for example nurturing, is more associated with a feminine, or if you’re more assertive, or aggressive that’s often associated with, um, with the male gender, and so in that way, I sort of slide on a scale where I don’t really often, I often don’t behave in [Sonja laughs], the way people expect me to behave, and in that way, I feel very non binary, even though I’m not as much playing with the external aesthetics.
L: I’d love to kind of go back to, we haven’t, talked more generally about your work. But I’d love for you to tell us a little bit about your writing in general. Why do you do it? Um, what do you love about doing it? Can you tell us a little bit about that?
S: Sure. I think, like for more writers, it is trying to work out things about life, through that call and response of writing and for me, intersectionality has been a big theme, um. My unpublished manuscript, title was actually Strange Intersections because I’m very preoccupied with how all of these different aspects of our lives intersect. And I think everybody, you know, lives with intersectionality, um, but I guess the term is sort of being coined more to focus on people who have marginalised intersections. And that’s been a big focus in all of my work, whether it’s poetry, short story, or long form, because they’re the big questions. And, um, I, um, I write a lot about religious oppression, in a lot of my work, because I grew up in a very devout family. Ah, and they, um, you know, when I was younger, I was being brought up as Lutheran, and they had some really, sort of extreme kind of interpretations, so when I was a child, I was told you know, when you, can’t tell the different between a man and a woman, ah, that is a sign that Satan walks among us and a sign of the end of days. And, so it was a deeply, tra-, I didn’t know what transphobia was at the time, and I was quite a young child, when these sorts of narratives were being introduced.
L: Wow
S: and um, they sort of went really deep into my psyche, and it’s part of why it’s taken me into my 40s before I had a gender epiphany because I had this such deeply internalised transphobia. Yeah so the work often sort of explores the impacts that, as a parent, um, you know, I’ve thought a lot about, because as parents we naturally want to impart our values and our belief systems and that’s how we survive, that’s how we understand the world and we, impart that to our children, but for gender diverse people or, you know, gay and lesbian, or pansexual people, those messages are huge, can be hugely damaging, and for me it was really detrimental. Um, and so it’s trying to work those things out, that tension between parents just loving you and wanting to do the right thing and sometimes the right thing for some people can be hugely damaging for other people, so it’s those intersections that I’m really interested in, yeah.
L: Very, definitely interesting. And I’m sorry to hear about your experience growing up, that sounds very, um, traumatising.
S: Thank you, um Liel. It was, um, and it’s probably not an uncommon experience for people in the queer community, who have been brought up in religious households to find that traumatic.
L: Yeah, and can you tell us about how the gender epiphany then, as it happened in your 40s you said. How that, changed things for you, if at all?
S: Ohh, it changed a lot of things, I guess. Well, as well as losing my teacher, one of the other things that brought about that realisation was feeling attracted to, um, a gender diverse or trans people. So um, and, looking back retrospectively I realised that it was always there, I just didn’t see it that way, because I didn’t have the language and I had all of these overlaying sort of subconscious factors that were concealing it from myself, so, um, I’m still working it out. You know, it’s not, um, it’s only been a couple of, you know, a few years and so I’m still looking at what that means to me, and it’s a bit mind bending because um, you know, people say, um, body parts don’t equate gender, um, but often, um, gender diverse people will alter their body parts to affirm their gender, so it’s sort of a bit of an oxymoron, [Sonja laughs], in a way, and so I’m thinking about chest surgery, but I’m thinking, well, if I change to a flat chest, that’s going to be perceived as male, and as an agender person, there is actually not really something I can do with that, that won’t sort of end up being perceived or fall into, that, either presentation, so I’m a bit confused about it actually. Sonja laughs.
L: Yeah, I bet! As a person that I never felt like, a proper quote, unquote girl or woman, those labels never felt right for me. Um, and in recent years, I’ve started using both, um, pronouns, she/her as well as they/them. And, as a kind of tiny step of acknowledging that part of myself, but it is very confusing for me to even go, what is, you know, what is the label that suits me best and how do I, um, kind of come to terms with that and how do you communicate that and what does that mean for all the different parts of life? As a feminist and all these different things, it’s very
S: Yes
L: Very, um, very confusing. Liel laughs
S: Yes, I can, I can totally relate and I think as a write it is this sort of frustration where language is, you know, there is this love for language and language is so powerful in so many ways, but in other ways, it’s sort of quite inadequate, because sometimes it can’t capture, there are no words for what you’re grasping for.
L: Yes, exactly. Um, and this is why we are having this conversation, but I guess just a little side note about language. I mean, it’s not, it’s just related to that, I guess, is I grew up in Israel with the main language there is Hebrew. And for those, who don’t know, Hebrew actually has, it’s a gendered language, so everything has a gender. Every item has a gender. A tree is a male, a table is a male, but a cup is a female. And they’re quite random, and um, and people are always referred to, like you cannot speak without assigning a gender to the person you’re speaking to, or about. And I think that is a very limiting part of that language and is a big part of something I’m grappling with, as a parent, because I use that language, um, in my home, and I think also growing up with that language complicates things as well because people would always refer to me as a female in the language because that is, you know, the body that I was born with. But, you know, does that match how I feel? Not necessarily, um, so yeah just another complication to that.
[Theme music]
L: Now you have mentioned the impact of all of this on your mental health, and I’d love to hear firstly, can you describe or tell us how you identify because people that have mental health challenges, you know, identify in lots of different ways. Some people use the term mental illness, some people use mental health challenges, others use psychosocial disabilities, there’s lots of different ways. How do you identify if at all, like, how do you talk about that?
S: So at the moment, I’m comfortable with saying I experienced, ah well, have trauma-related mental distress. And so the reason I choose that is, um, you know, having experienced many different circumstances where, before I even recognised I had mental health condition that I was I was being treated differently by medical professionals I was talked down to, I was misdiagnosed, and on a couple of occasions even molested, so I had really negative experiences of the medical model. And so in a, I guess, an effort of self-preservation, self-protection, I have rejected the pathologising language around that, but I’m simultaneously still looking for a diagnosis so braving another psychologist to see [Sonja and Liel both laugh], to see, you know, and that’s more about accessing more targeted support than the label itself because if you look at diagnostic manuals, the the lang- the medical language itself, perpetuates stigma often. It’s very, some of its really condescending and sexist and all sorts of things. So I’d sometimes try and self diagnose them and read these manuals and go into a rage and throw them across the room, because they were awful. Yes.
L: Um, thank you. And I’ll have to start by saying, I’m so sorry that the system has done that to you and failed you so badly. That’s just unacceptable.
S: Thank you. Um, I have found it really difficult, but because because they failed me so badly, I actually sought a lot of alternative therapies, I got a diploma in hypnotherapy, and all sorts of other alternative therapies to find ways to self soothe, because I wasn’t getting this the support that I needed from the more sort of clinical side of the health sector. So um. And, you know, that that was that was really interesting process, to, and also, in a way self-empowering. So it was sort of this dual experience of feeling neglected by the system, or invisible, but also being forced to find other ways of managing, has given me a sense of autonomy and a staunch sense of, I’m not going to let anyone else, you know, control that. I’m going to have agency over my mental health, how I’m diagnosed who I speak to, um, because it’s one of the most discriminated areas of health. And, unfortunately, people do need to protect themselves because it can affect employment, it can affect quality of life. It’s a well-known statistic that people who have chronic mental illness are more likely to, you know, have shorter lives, live in poverty and be abused. So so I’m, I’m sort of proud of myself that I found, found a way to kind of wangle through [Sonja laughs]. But I really wish it was different because not everybody, you know, I still built that on a measure of privilege. Because I was, I had money to explore some of those things, people who don’t, are in a very different situation.
L: I think it’s important that I kind of recognise at this point that I also work as a provisional psychologist in the system. And I come into the work from a very, I hope, different perspective, taking into account my live lived experience of disability and living on the intersections of marginalised groups. And also, I’m a big believer in changing the system from within, which is what I am hoping to do. And I am very aware and very passionate about changing the big flaws that we still have in that system. And I take responsibility when I work with people to do the best that I can to not perpetuate the problems that we have. But also, I think it’s so important to recognise how the psychosocial factors in people’s lives like those that we’re talking about, have such a big impact on mental health. And that’s something that I see as completely lacking in the medical model, both in psychology as well as physical health. You know, people come to see mental health professionals and often get only talked about symptoms and symptom reduction as an aim, rather than looking at how holistically a person is living and what systems they are navigating, which is something that I think we should all advocate for and needs to change.
S: Yeah. And, and thank you so much for doing that. And I, um, that was one of the you, I can hear that on your podcasts that you’re a staunch advocate for that. And I think it’s there’s there’s real value in working the system from the inside and I’m grateful to people like yourself who have persisted with I’m sure what, what may have been frustrating at times with, you know, in terms of education and how things are framed. [Sonja laughs]
L: Yes, absolutely. And that’s part of the problem. I think part of the problem that we have in those systems is that they are very ableist and there is you know, they’ve been built by and for so called non-disabled, healthy people and then coming into fix, quote unquote, people that don’t fit into those categories. and I feel that by incorporating more disabled people or people with lived experience of various marginalisations, that’s the, you know, the I see it as one of the ways to kind of change things.
S: Yes. Well and a lifetime projects, I imagine. [Liel and Sonja laugh]
L: Oh, yeah. And I would love us to go back to what you mentioned about, you know, living in a, in a household with intergenerational trauma and having post-war experiences. Can you kind of talk about that. And maybe before we go on, it might be important for me to actually say, to kind of start the conversation by letting people know, listeners, that I was born and raised in Israel as a Jewish person, I have family who are Holocaust survivors and family that have been murdered in the Holocaust. And I was raised in a very war-torn country, which it still is, Israel and with a lot of hatred, and fear. But right now, I have no hatred or fear in my heart for any person, or any group of people is more important. And I’m a big believer in communication and reflection, and collaboration in terms of how we can move forward in creating a justice, more just world and also in healing and in I guess, creating peace, kind of very important for me to say that I would, you know, I’m very open to hearing any love for our listeners to hear as well.
S: Yeah, that I don’t really know what to say about that. But I just wanted to acknowledge that that that must be really hard to have lost family in that way. I grew up in a German family, and a lot of people don’t know that at the end of the Second World War, there were certain camps that Jewish victims were released from and the Russians that were moved into parts of Poland to occupy it, rounded up German civilians and filled the camps, that, filled those camps up with German civilians. And so my my family members, my my paternal grandmother, aunties, uncles, cousins, that whole side of the family was incarcerated. They were shovelling peat in those work camps. And my grandmother thankfully escaped. I think, because her children were sick, she had two young daughters in the camp with her, one of which didn’t survive later died of typhoid. And so she, she was on the run, when she escaped with Russian soldiers in pursuit, and everybody hated the Germans at the time. So she had to hide her identity, she pretended to be Polish, and then ended up, well she ended up with a Polish, in a Polish family and having having a son to the son of the family there, and with, without a lot of agency. So she was in a very difficult situation, and it took and that’s where my father was born in Poland, and eventually, a relative found her. And when my dad was about 16, they eventually moved, moved into what was left of Germany at that at that time. So I mean, that’s a very sort of butchered short version of a very complicated story. Um, and, but what that did was, you know, the truth was very dangerous. And so some of the intergenerational trauma can be around, you know, being honest. So, sometimes there’d be situations, very strange behaviours, situations where, you know, say, for example, my parents would do something, and I would confront that. And then they would say, we didn’t do that. [Sonja laughs] That never happened. So because there was this instinctual fear that the truth was dangerous. And that was something that I recognised was directly passed down through that intergenerational trauma. But what that did for my mental health wasn’t great because it’s a form of gaslighting, which wasn’t intentional, but, um.
L: I think some people perhaps don’t understand how our grandparents’ experience can really shape our experience. And that’s something you know, I find that really incredible how I can relate to that part of you, even though we have such different and our families have such different stories, but my grandparents experience have direct impact on me even now, as they’ve already passed and I’m in my 30s. Can you tell us about how that comes into effect for you now? Like how does that affect your day to day, if at all? What does that bring up for you? Or how do you deal with that?
S: It’s an ongoing, it’s an ongoing process, um. And my, you know, my grandmother is, even though I didn’t know her, it’s a huge loss. You know, being first generation migrants, and not knowing, really the family at all was this huge loss. And there’s a strangeness around how I even learnt about about the concen-, the camps that my paren-, my family were in, was when I was pregnant with my own son, I was spiritually searching and I bought a deck of tarot cards and my father said to me, oh you’re like my mother. She, when she escaped from the camps she was on the run, and she read tarot cards at train stations for peo-for money, to survive. And it was this
L: Wow
S: Amazing. I had not heard this family history at all, um, and suddenly
L: Up until that point? You didn’t know any of the history until, until that pregnancy?
S: That’s right, yeah that’s right. Until I bought those cards. And it was this really profound thing where the post war history sort of unravelled. My parents never talked about it, so that’s how the story unravelled and then I sort of became a bit obsessed about my, my grandmother, um, because I never met her and he said I looked like her, I had similar interests and so, it was this really lived experience of, um, how we literally can hold those memories, or um, likenesses, of our, um, our, grandparents, without even, without even knowing, so that’s yeah. And, at the moment, it’s still something I am searching for, because, um, in trying to find out more about my grandmother, um, I, uh, I realised that there were rumours within the family, one of the family members that survived the camps, claimed that my grandmother had Jewish lineage. It’s something I am still pursuing documents from Polish archives, and I haven’t found any evidence yet, and um, it’s not something that I do very comfortably, or you know, it’s a sort of, I don’t. You know, everyone in the family says, why are you searching for that, and I think it’s this, um. I think for a long time, I felt so ashamed of German heritage that that search was in part fuelled by, you know, wanting to, um, you know, mitigate this idea of a national perpetrator, you know, and I’d rather identify with a, in the past, I would had rather identified with a victim instead of a perpetrator. And so, for a while, my search was fuelled by this shame, you know, but also, because I was so much like my grandmother, I also wanted to unravel this mystery, um. And so as I’ve, in the last few years as I’ve moved through that journey, I’ve realised that, you know, the whole idea, the whole concept of victims and perpetrators is part of the problem in terms of how, um, you know, how these things come about and how, um, you know, revenge is justified, um, and it’s just a vicious cycle, so um, the whole experience has just taught me that that, the necessity to kind of move out of that, you know, out of that binary, which it is, it is a binary [Sonja laughs], as well.
L: Yes it is. Ah, there’s so much I can say about this, but I mean the first thing that comes to my mind is how you talk about shame with being, about German heritage and this binary between perpetrators and victims, and it is so relevant to my experience. I mean, growing up, the whole, um, story around the birth of Israel of a nation and everything else, was around being victims of the Holocaust, and that’s always been, made the connection. Um, a very, unbelievable connection, really that has been perpetuated for decades. From ’45, ’48, when Israel was born, is basically the rhetoric in Israel is, we have been persecuted and murdered in millions and therefore we have to now be our own protectors and become, as you say, move to the other side of the binary. Not to become perpetrators of violence, that’s not what is being said, but we are, we need to move out of the victim, in order to protect ourselves. And as you say, um, the violence is being justified using this idea constantly. And military occupation and dispossession is being justified because of that experience, until today, so Israel is still grappling with that today. And now, as I am, I am also a first generation migrant and so, as I’m doing the work of reflecting and also looking at media that doesn’t exist in Israel around, um, what’s happening, I really see that impact and also, yeah, I also think we should move out of that binary, and I feel a lot of shame and fear when I say, or people know about my heritage, because Israel is, I mean, in the present, Israel is perpetrating great crimes. And reconciling that is so difficult, so I don’t know if you have any tips for me. [Sonja and Liel laugh].
L: Because I grapple with that a lot.
S: Yeah, oh, I wish, I wish I did. I think everybody should be non-binary, see this is [Sonja laughs]. No, I don’t mean to make, I don’t mean to make a joke of it, but I, um, I think, that it is those, um, seeing things in those binary ways that is such a broad problem within, that drives conflicts, um. And, because those situations are so complicated and, um, it requires people to engage in the nuances and really listen to each other, and with an open heart. And that’s, a really vulnerable and difficult thing to do and in a patriarchal, um, system that is not designed to accommodate that in any way, we definitely have our work cut out for us. [Sonja laughs]. Um, and I think the only thing I could say is that, you know, these things, you know these conversations that we’re, the conversation we’re having now, and future conversations, they’re all drops in an ocean that hopefully will, you know, or you know, a movement towards change and um
L: Yeah
S: And I’ve had to sort of accept that, because I, you know, sometimes I’ve, I’ve tried so hard to be an agent for change that I’ve, you know, pushed my own, over my own boundaries, or for, you know, disregarded my own, self-care because I’ve wanted change, but um, as I’m getting a bit older I’ve had to accept that it’s just, some things are not going to happen in my lifetime, I can do my bit and that’s it. [Sonja laughs].
L: That’s a very, a very wise thing. And I’m still in the process of accepting that, cause I haven’t accepted that. Now, we’ve talked about so many different things and I’d love to hear, Sonja, from you, as a way to kind of summarise our conversation, what does intersectionality mean to you?
S: Okay, um, intersectionality to me means, um, two or more identities, um, and their related circumstances meeting. So often, you know, adversely affected or marginalised people, or within a person. Um, and I think that that’s sort of the, um, that’s sort of the down side of intersectionality, sort of that, or the challenge within intersectionality that those marginalised or difficulties meet, meeting, um, but they’re also, you know, on the up side, they’re the places where people can meet and learn, learn from each other, um, places like this podcast, um. There’s a line, actually in um, the poem that I wrote, Leonard Cohen says um, “there’s a crack in everything, that’s how the light gets in”, and I was thinking about that, um, I think it comes from an older, um, saying, or a spin off of Rum-one of Rumi’s sayings, the wound is where the light enters. And I see intersectionality quite a lot like that. That, you know, the wound is where two parts, ah, well it’s an open wound, but two parts are meeting and that’s, that’s the opportunity that’s where the light can get in. Does that make sense?
L: Yeah and I love that. Thank you, and Sonja can you tell people about where they can find your work?
S: Thank you. Well, at the moment, the only social media platform I’ve been able to manage and keep my mental health intact is Instagram, so I can be found on Instagram. My handle is s.v.plitt.writer. And so, um, any publication announcements or events will be posted on the Instagram account.
[Theme music].
L: Yep great. And I’ll pop that in the show notes as well, so people can just click on that, but yeah, everyone go and follow Sonja and support you. It has been such a great conversation, Sonja, thank you so much for being here today.
S: Thank you so much for having me, it’s been an absolute honour and a pleasure. Thank you.
L: Before we go, a grateful thanks to the City of Melbourne Arts Grant 2022 for supporting this episode and the entire second season of the (Un)marginalised podcast. I would also like to respectfully acknowledge the traditional owners of the land on which this episode was produced, the Boonwurroung people of the Kulin Nation, and pay my respect to their elders past, present and emerging. As we tell our stories, I want to highlight that traditional owners of this land have been storytellers for generations. If you enjoyed or learned something from the episode, please rate, review, and share it with a curious person in your life.
[Theme music fades out].
June 4th, 2021:
(Un)marginalised: S1, E6 with Shira (Teaser) – Episode Transcript
Teaser transcript:
“Shalom everybody, I’m Liel K. Bridgfrod and this is (Un)marginalised. You’re listening to a very special teaser from a bonus episode released for patrons only. If you like to listen to the rest of the rest of this episode, go to my patreon account on www.patreon.com/LielKBridgford or just click the link in the show notes. Now, do people still ask you about your accent? Or comment about it?
“Yeah.”
“Tell me, because we are, how many years has it been now?
“About 16, 17.”
“So 16, 17 years and people still comment and/or ask about your accent. Tell me what they say now.”
“They ask me where I’m from, to be polite.” Liel laughs. “They don’t want to guess anymore because my accent is confusing. People think, a lot of the time they think I’m American, or from somewhere else. I was in America about, close to ten years ago. And there people asked me where I was from as well. Here everyone asks me are you American, but in America they’re like are you Australian? So apparently to Australians I sound American but to Americans I sound Australian, so I don’t know what my accent is sounding like anymore.” giggles.
“People comment, or ask or laugh, I’ve had quite a few people laugh at my accent.”
“What?”
“Yeah, people laugh at my accent. Someone, I would not name that person obviously. Back when I was still studying, and I was trying to get into an internship, which I got at the end for the record.” both laugh. “And it was like a phone helpline work. But someone, an Australian, obviously, said something like, you know you’re going to pick up the phone and they’re going to hear your accent, that’s so cute. Something like that.”
“Oh my goodness.”
“And literally laughed.”
“Wow.”
“And that was so hurtful. I remember feeling anxious before the interview.”
“That would’ve made you feel a lot more anxious.”
“Yeah, because I was like, are they going to reject me because of my accent? Asking where you’re from, that’s another thing that-”
“It makes you feel like you don’t belong.”
“Exactly.”
“Cause, oh, I’m from here, No you don’t sound like you’re from here, no you don’t look like you’re from here, so where actually are you from? But for me, I am from here. I’m from Melbourne.“
“And you’re an Australian citizen as well.
“I am.”
“And you have been here for 17 years, and you’ve done more than half your schooling here, and university, and you’re working. You are Australian.”
“I need to say, a little funny story here. I love my manager to bits. So if she ever hears this, I love you. Um, giggles. I was at work a few months ago, and I was having a bit of a rough week. I’ve had a lot of report writing to do. And my words were becoming a bit mumbled and jittery and my writing was not great. Usually I pride myself a lot on my writing. My manager was touching up on a report that I was doing, and laughed and kind of said, oh it’s not like English is your second language, obviously on a good day you would write an amazing report. You just had a few hiccups, It’s not like English is your second language. I’m like, actually it is, I think you forgot.” giggles.
“I find that really offensive though, as well, honestly. It kind of sounds like a compliment.”
“Almost.”
“But I’ll just note to anyone who’s listening, that’s not a compliment.”
“It was a genuine forgetfulness, unintentional.”
“Of course, she wasn’t trying to be mean or anything like that.”
“No.”
“But in general people make comments about, if you don’t sound a particular way, if you don’t have a particular accent, like the mainstream accent, then it means that you’re not, your English isn’t good enough. And I find that really, it’s an assumption that people have.“
“It’s an assumption that if you’re not born here.”
“Yeah, then your english isn’t good enough, or your language skills, or your communications skills. And I find that really offensive. Why do we need to eliminate individuality in styles? A person that comes from a different culture brings another layer, and it’s not the same, but that’s not a bad thing.”
“No, not at all, it’s adding to it if anything.”
“Exactly. And so, I find that really offensive, oh it’s your second language, just because it’s my second language doesn’t mean I am less good at it than you are. Just because my vocabulary isn’t as large as someone else’s it doesn’t mean that I am not as good at communicating using this language. Studies show that if you’re bilingual or multilingual then you have better capacity to use languages in a creative way.”
“Your brain is supposed to be more adaptable. You as a person are more adaptable to change, and I think it also causes your brain to be more elastic and be able to absorb more and learn more. Um, I think people always say that people who know more than one language are a lot smarter in some ways.”
“I mean I’m not saying we’re smarter.” laughs.
“I mean, I am.” laughs.
“You are, definitely. Laughs. But I just want to get the recognition that we are not less smart than someone else. I think that’s the basic thing that people need to stop believing. And replace that with an enrichment kind of idea.
I’d like to respectfully acknowledge the traditional owners of the land on which I’m recording the podcast, the Warranjri people of the Kulin Nation, and pay my respect to their elders past, present and emerging. As we tell our stories, I want to highlight that traditional owners of this land have been storytellers for generations.
Thank you for listening to the teaser episode. If you want to hear the rest, just go to my Patreon account, you can click the link in the show notes. And don’t forget, you can connect with me on any of the major social media outlets. Just find me on Liel K Bridgford, or click the links in the show notes. Looking forward to connecting with you.”
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May 7th, 2021:
(Un)marginalised: S1, E6 with Jennifer Hankin – Episode Transcript
“Shalom everybody, I’m Liel K. Bridgford, and this is (Un)marginalised. My guest this week is Jen. Jen is a musician, a photographer, writer, stylist, videographer, a lover of cats, and a receiver of a late autism diagnosis. Before we begin, please note that the following episode contains references to mental health issues, ableism, and family violence, so please take care as you listen. Welcome Jen, and thank you so much for coming.”
“Hi, thanks so much for having me, very excited.”
“Me too. So, to start our chat Jen, can you tell us what intersections of diversity do you identify with?”
“Yeah, the three big ones are – I identify as a musician. Um that’s kind of my career path and lifestyle. I identify as a woman, and more recently I identify as a disabled person. “
“And I’m really curious to hear, because as you know I’ve lived with a disability my whole life. And you had a very late diagnosis. How that was like for you, receiving a late diagnosis and how has that impacted your sense of identity and I guess your life as well? “
“Yeah, so in my case um, I was diagnosed with Autism two years ago at the age of 25. And this diagnosis had come after a more than ten-year journey begging mental health professionals to give me any sort of support. One of my earliest memories of high school is figuring out that there was a school counselor. And then, as soon as I figured that out, I was in their office, making appointments, being like, there is something drastically wrong here. I feel sad all the time, and anxious, and I’m not coping. Help, please. And that was kind of a pattern all through my university and then through the beginning of my professional life as well. Seeking out those resources and being rejected because I’m just depressed or just anxious, um.”
“Yeah, and you’re using quotation marks around that. So that’s what you’ve been told by mental health professionals since you were in high school?”
“Yeah, then with the diagnosis, learning about others’ lived experience has quite literally been life-changing for me. I just happened upon a blog post written by somebody. She talked about how the medical health professionals had missed her autism which was quite obvious. Because it doesn’t present in the way that psychologists are used to in women. So ah, the current model is based of a lot of research done on young boys. And when it comes to young girls it presents in a very different way. And I just read this list and I was like, oh ok, this person is quite literally me.” Giggles.
“That’s a really important point about you know research and what the knowledge is about mental health but also health in general. So much of the health research throughout history has been on males a lot of the time, and we have so little understanding about female bodies and minds. So what happened for you in terms of your identity, since you started reading and connecting as well with lived experience?”
“There have been two major outcomes from getting an Autism diagnosis. The first was, for the first time ever, having my experience and the struggles that I went through ah, acknowledged and legitimised. Turns out I wasn’t just being fussy and I wasn’t being ridiculous. It’s just the way I am. The second thing has been dealing with a lot of anger, specifically towards those who are in positions of power, mostly educators and medical health professionals. Laughs. Which, I’m sure you can relate to the medical health professional part definitely.”
“Yep.”
“I shouldn’t have to beg to be believed. And that has definitely been my experience.“
“Those are very two different outcomes. And I have seen a lot of dismissal of especially women’s mental health in my career. And I guess the words that you use, I find that really powerful, those words like ridiculous and being fussy, and they’re so stigmatising. And I just, firstlyI just want to say that I’m sorry that the health professionals haven’t given you what you deserve to get for all those years. “
“Thank you.”
“You should’ve got much better than that.”
“It’s really nice talking about this with other people who understand, other people who have been through a similar experiences. There’s almost like, a solidarity in, yeah I’m gonna call them traumatic medical experiences.”
“I totally agree with that description. My kind of main experience, which is different. But the first thing that comes to mind for me in terms of the medical, you know, not being believed, I’ve had so many experiences like that about pain growing up. So I would yell, like literally yell that this is really painful, and I would get laughed at, like literally nurses and doctors would laugh at me that you can’t feel it. And then they would get down, that was when they were cutting a cast off once. And once they got the cast off they saw they did cut into my leg, but they didn’t believe me, that’s just one example. But I agree with the sense of solidarity. That, it does upset me to hear that you and other people have experienced similar things but at the same time I feel that coming together and having these conversations, this is so powerful, and is the way forward.”
“Yeah. Yeah, um, it also hurts to hear that you’ve been through similar things.”
“Anger is a really difficult emotion to deal with, especially when it’s kind of directed at past experiences that we already have kind of lost control over. How have you been dealing with that, if at all?”
“Not very well, quite honestly.” Liel giggles.
“Um, so I think it’s really important to talk about where a lot of the anger comes from. As a musician a large part of my job is spent passing on the craft to other people. So ah, I like to say that my job is trying to teach tiny children how to play the flute. Laughs. Which is my instrument.”
“That’s a very cool job by the way, as a side note.”
“Um, yeah, since teaching these kids I have had to develop all these different strategies and ways of thinking about the craft, and tailor that to each student that I meet. And figuring out how every student learns is definitely the source of my anger. Just realising how much was missed by the educators that saw me through my education.”
“So you feel that what you’re doing now wasn’t really done properly, for you?”
“Yeah, there are just some really key points, um, that I can think of, in my education that could have been handled very differently. Just contextually, every time I have to sit down to work on an assignment, I have an anxiety attack. Multiple sessions of tears, big meltdowns, and it’s only getting worse. And that stems from a lot of teachers putting me in the ‘oh you’re not good at that box’ and then deciding that their effort was wasted on my learning.”
“That’s a horrible thing for a kid to hear.”
“Yeah, and it really sucks watching my students be traumatised in the same way. There have been a number of students who, they’re not naturally academically gifted. They’re lovely kids and they try really hard. But that hard work doesn’t translate into measurable success that their teachers would like to see. And there was this one student who I took for two years and she started out as like this bright, confident kid, who was just full of energy and excitement and just stoked to be at school every day. And then by the time our time had come to an end, she just checked out because she didn’t really wanna be at school cause what’s the point of going to school if you’re just going to get in trouble every day and be put at the bottom of the class and singled out because you’re not doing well.”
“It really saddens me to hear that that’s still happening.”
“Yeah.”
“And that sounds really hard for you Jen in terms of the repeat of that trauma.”
“It’s definitely full on. And it’s one of the things that’s on my work on this with my therapist list.”
Liel giggles. “Yepah, has that been helpful? Do you feel that there’s been a shift since your diagnosis? Has it been more effective for you to get support or easier, or anything like that?”
“There’s been parts that are easier and parts that are harder. Having a diagnosis on a piece of paper that I can take to a medical professional or a mental health professional and say look, somebody gave me the stamp of approval that says you actually have to help me. Um, that’s got me into seeing a really good psychologist and it also led to, for the very first time, a doctor taking me seriously. The tricky part I have found is engaging with the disability safety net. I am on the NDIS, which is the national disability insurance scheme. And I feel very lucky to be on it now, but the process of getting on that was horrible. They kept losing my paperwork, and shifting me around to various places. I almost quit about six times and the only reason I didn’t is because my parents stepped in on my behalf and finished the application process. After getting a new psychologist and starting to work with an occupational therapist, I have been told that I should have received a lot more funding for support. Now I have just began to undertake the application process for the disability support pension, because I have reached a point with my work where if I work three days a week, I can’t cook, clean, do the washing, and also turn up for work the next week. Let alone focus on any of my artistic pursuits which is what I actually wanna be doing for a living.”
“I’m so glad that you’ve had your parents’ support in terms of stepping in and finishing the applications. But a lot of people wouldn’t have that option, and a lot of people would quit and also a lot of people wouldn’t actually get the support, or the sufficient support that they need. That’s a big burden, on top of all the other things that you’re kind of managing.”
“Yeah, just to go back to your point about all of the people who don’t have the same support network that I am lucky to have. I think about that all the time. I personally know a lot of people who are in a similar situation to me and it took them twice as long to get the same supports as I did.”
“Right.”
“And they managed to get through the application process. How many other people have just slipped through the cracks in the system?”
“What you received your diagnosis, in terms of representation. Because up until the point of getting a diagnosis, I’m assuming most of the information or knowledge that you’ve had about autism was through media or some people you knew, is that right?”
“Yeah. I ah, I can’t say that I knew much about autism through the media. I like to describe my um, participation in popular culture as there is a rock and I am underneath it.” laughs.
“Ok.” laughs.
“I’ve missed a lot.” Liel laughs. “But I’ve had a few friends who had, still have autism, ah, they’re men now. And they present in what would be the medically appropriate way for the diagnosis.”
“Do you feel that your perception of autism has changed?”
“Yeah, definitely. Autism, and through the larger network um neurodiversity, I think, and I don’t have any research to back this up because I’m not a professional. But from the lived experience I’ve been engaging with, it seems to be a disability that if you are, in some ways lucky enough and other ways unlucky enough to have the skills, you can appear to be completely, I’m gonna use the word normal, even though I don’t really like it, but I think it’s a term everybody understands.”
“Yeah.”
“Yeah, you can appear to be completely normal. It’s definitely an invisible disability. That’s kind of what makes it so difficult, cause you can’t see it, you can’t touch it, you can only describe it, and if you describe it to the wrong person they’ll invalidate you.”
“Have you made a connection with the disability community at all since your diagnosis?”
“Yeah, I’ve just started to dip my toe into a few different spaces. So there are some lovely Reddit groups, one of them is called Aspie girls I think, there’s a couple of Facebook groups. But then I personally know five other women who have had very similar experiences to me. Four of these women have been formally diagnosed, and one of them hasn’t been able to pursue a diagnosis because currently the average price of diagnosis in Australia is $2000.“
“Massive price tag, you would need to fund in order to get a diagnosis. And obviously diagnosis is really pivotal in getting supports and all of that. And an important point that obviously a lot of people wouldn’t have that, those funds in order to do that, especially people from marginalised communities as well, so people who would be from low socioeconomic status, or migrants on different visas etc.”
“Yeah.”
“Would be much less likely to be able to get that, and then the disadvantage kind of amplifies with that. I wanted to ask you about gatekeeping, because some people. And you have listened to the first episode with Emily McIntyre who talked about gatekeeping in some of our communities. Have you experienced any gatekeeping yourself?”
“Gatekeeping seems to be a lot more of an issue in the mixed gendered spaces that I’ve engaged with. The women and non-binary spaces, at least in my expeirece, they’ve been very focused on inclusivity and intersectionality. So the philosophy of the two Australian autistic women’s Facebook groups I’m a part of, the philosophy is, everybody has their own way that they like to identify. The two big ones are person-first language versus identity-first language. So, if you’re a person who prefers person first language go for it, if you prefer identity first language go for it, but don’t correct other people on how they choose to identify. And I suppose I haven’t seen the gatekeeping.”
“I’m glad to hear that. And also I think really important point about not correcting other people’s ways of identifying. I’ve been getting that. I’ve had someone, I think it was a parent, contacted me once and said: don’t use the word disabled it’s really outdated. And it took me a few days to recover from that message even to be able to help her, ah, respond to her sorry. And I had to write a complete blog post about it, because I was so angry. Laughs. And I was like this is why I say disabled, and there’s a reason for it, and don’t correct me, thank you very much. Laughs. Now, you’re a multidisciplinary artist, which quite is amazing”
“Oh thank you.”
“I’m very impressed.”
“In terms of your identity and your diagnosis, can you notice any changes in your art, significant changes that happened in terms of the way that you practice or your themes that you engage with, or anything like that?”
“Yeah. So the most notable change has been in my writing, like my words writing. It comes out in two ways. My blog posts, which I would describe as highly political, laughs. Although also not as political as I would like them to be. And then in a metaphorical context, my songwriting.”
“Beautiful.”
“There’s a song that I wrote recently. It’s called Make Space. And um, the song itself is singing about I don’t know, I’m a planet, and I am orbiting, things, and there’s a spaceships, space, stars, all that sort of jazz. Liel laughs. Um, but the place it came from was this overwhelming feeling that for me to flourish as a person I can’t feel like I have to force my way into spaces. I need to feel like somebody has made that space for me.”
“That’s a very beautiful description and I think it’s, would feel very relatable for a lot of people. Because as someone who comes from a population that’s been, I use the term historically marginalized, but it’s not really historically because it’s still current. Laughs. You know, there has not been spaces for voices like your voice. And, can you come to Melbourne and perform it please?” laughs.
“It’s in my plans.”
“Ok.”
“I’m waiting for COVID to be less covidy before I commit to booking gigs in other states, but it’s on the long-term plan.”
“Ok, so you’ve written before about stigma, because I’ve looked at your blog quite intently the other day. And, a particular line… Not in a creepy way. And a particular line from that specific post stood out to me. And if you don’t mind I’m gonna read it out.”
“Yeah, go for it.”
“Ok. ‘My experience of stigma is never being able to exist as yourself safely in a majority of spaces. It’s not feeling safe to reach out to systems and supports that are suppose to be able to help you, because the label carries more risk than suffering in silence and pretending to be fine. It’s watching people exhaustingly raise awareness all the time, yet not seeing politicians makes systemic changes that will actually help.’ You have wrote this Jen at the start of the year I believe.”
“Yep.”
“And we are recording in April.”
“Yes.”
“Firstly it’s a beautiful passage and that’s why I wanted to read it out.”
“Thank you.”
“Thank you for writing it. And also, can we talk about the time between the day between the time that you published that, or wrote that and today. Because right now we are talking openly, and publicly. Both laugh. About labels. It’s very different.”
“Yeah.”
“So do you feel that there’s been a shift, or is it still a process, how has it happened?”
“It’s definitely still a process. When I wrote that blog post. I say when like something has changed in my mental health state. Ah, I’m’ still currently in a really dark patch, and have been for over fifteen years now. Giggles. So that particular dark patch, it came out of the knowledge that I would have to return to my workplace after school holidays and go back to fitting into a neurotypical existence. Because mentioning my mental health state and my disability to my workplaces carries the risk of being dismissed with not much notice. Which is a reality for a lot of people who are casually employed, or grey area employed. At the time, there was some government thing, it was something to do with, oh everyone’s feeling real sad after 2020, so here is some government ads about how you can call Lifeline or Beyond Blue and it’s gonna be fine. I’ve just seen too many campaigns that haven’t resulted in any change for myself or the people that I know that have complex Mental health issues. When you have mental health issues you’re more likely to be poorer, you’re more likely to have a horrible quality of life. It almost feels like a lot of the systems that have been put in place for mental health would just kind of rather you just stopped existing and didn’t engage with them. Because then they have to put in effort to give you a better quality of life, therefore you are a drain on the system, therefore just go away.”
“And I guess I’m curious about what made you want to share more publicly some of those experiences? Because obviously there is a huge risk. And it’s very much important to note about unstable work arrangements, however discrimnitation does happen in very established positions as well. So you know, what has made you want to talk about it?”
“So there are two, um, a lot of twos tonight. Liel laughs. There are two very distinct reasons why I wanna talk about my experience. The first one, is a few years ago I listened to a podcast by a creator called Ona Istli, um she did a podcast with the ABC called no feeling is final. She was telling her own story of struggling with her mental health, which is pretty similar to mine. And a very abridged version of her story is – she went to a lot of therapy and spent a lot of money on mental health professionals, and her mental health only got worse. Hearing that made me feel a lot less alone, and in some strange way a little less broken. Because if I’m broken enough that the system can’t help me. But then there are also heaps of other people who are broken enough that the system can’t help them, maybe it’s not us, it’s the system. Um, cause the system is the common denominator there. And the advertisements for you know Lifeline and Beyond Blue and are u ok day is – reach out, and we’ll help you and fix it but, I have been reaching out for more than fifteen years and, my mental health isn’t really getting any better. So, yeah, there’s a safety in numbers there.”
“I have felt the same in a lot of ways when I’ve been connecting with lived experience and it’s quite. I’m almost blown away every time because our, like yours and my diagnosis are so different, however our experiences are so similar, and I found that mind blowing.”
“It shouldn’t be similar experiences either. Your issues stem from a tangible body part and mine come from cells firing in the brain. Yet the medical history of not being believed is exactly the same there.”
“There is that hope for me that you listened to that podcast and then here we are today. I’m sure there’ll be at least one if not many more people who listen to this and feel that finally there was someone out there who has had the same experience, so I think that’s really fantastic. Also, I am very sorry that that has been your experience with the system, because that is a big chunk of time, fifteen years.”
“Yeah, it’s, and unfortunately it’s all too common. “
“When I read out the passage that was a particular dark patch, and there’s today’s dark patch. Do you feel that it’s changing in any way? In the texture or colour of it? To the better or worse, or just sideways, or anything like that?”
“I like that term sideways. It definitely moves sideways. Um, sometimes there’s a really tangible reason behind my feelings and I can really pinpoint it and then take actionable steps to help. Sometimes I just feel deeply, darkly sad in a way that I just can’t explain and there’s no reason for me to feel this way, and I just do. I think that sadness is the hardest to deal with. I haven’t found a way out of it, which is very hard. And I suppose I have learnt to live with it, but that’s kind of not good enough anymore. I, I think it’s really important to mention that I had a significant relationship a number of years ago, and he was financially and emotionally abusive. Existing in that relationship, was me existing in a very dark place that was dark for a reason that was difficult to pinpoint. When I did pinpoint it I was thankfully in the position that I could leave. Saying this it still took me six months to leave that relationship. And after I left that, I decided that existing with that sort of emotional pain was no longer good enough, and that’s when I really started working towards sorting out my mental health.”
“So the first thing I would say is thank you for sharing Jen. That’s a very important thing to talk about, and a very difficult thing to talk about. And also, I am sorry that he did that to you.”
“Yeah, thank you. It’s really important to talk about. Again, one of the big reasons I was able to leave is because other women had shared their experiences of abusive relationships on the internet and I looked at them and I was like oh cool, that’s my relationship, great, I need to leave this now. That kind of sucks.”
“Wow.”
“Yeah, it’s still one of the hardest things I’ve ever done.”
“We talked about some campaigns and stuff like that, and we’re talking about lived experience being shared. So there’s a lot of awareness raising I feel, that the focus is much more on awareness raising. How do you feel about the relationship between awareness raising, acceptance and support.”
“With the awareness raising campaigns I have seen. I think the reality is that there is this disconnect between the awareness and the support. Um, and in terms of my own experience with acceptance, I think the difference the awareness campaigns have made with acceptance is people know it exists now, however they don’t really wanna engage with it. There was a very short period of time in my early 20’s where I decided for a month that I would be radically honest.”
“Yeah.”
“It did not go well.” laughs.
“Ok.” laughs.
“Ah, I had some colleagues say to me, I’m a bit worried about you, and that’s when I decided no more honesty, that’s not something I can be.”
“Ok.” both laugh.
“There’s a very specific facial expression people make when they greet you with how are you, and you tell them how you actually are.”
“Yep.”
“It’s a strange look.”
“Like this?”
“Yeah, it’s like that.”
“I am just making a really confused facial expression, that’s what I was going for.” laugh.
“Shocked and confused. Sometimes mixed with a little bit of, oh that’s a bit offensive, cause now I have to – care.”
“Yeah. laughs. Absolutely. And actually this is something really interesting about, sorry to interject Jen.”
“No, go for it.”
“For me, cause I wasn’t born in Australia. And in my country, we don’t really say how are you as a greet, we kind of say something that would translate roughly to what’s up. So you don’t just walk down the street and say to someone how are you? So when I came to Australia, random people would meet me at like bus stops, and coffee shops and say how are you, and I was completely, didn’t know what to say. I was really suspicious of that. I was like, why are these random people asking how I am, what do they want from me. They’re trying to like rob me, or get me to sign something. Because they obviously don’t want to know how I am.”
“I think that’s the appropriate reaction to that question as well.”
“Yeah. In the episode that’s actually gonna be released tomorrow, I’m actually talking about this to someone else in America. So it’s really interesting how I think the Americans and the Australians both do this how are you, but not actually wanting to hear anything. So let’s change that shall we, if you don’t want to hear how someone is, don’t say how are you, just say hi.”
“Yeah. I do want to share my perfect reply to this question.”
“Go for it”
“So the reply that I give when I am asked how are you. I say either I’m going, or I’m here. And that lets the other person know that I have shown up to do whatever it is I’m gonna do, but ah, anything else is not really their business.”
“I like that.”
“I’m really tired of pretending to be fine when I’m not fine. It’s not their business if I’m not fine, it’s also, it shouldn’t be placed upon me to make them feel comfortable by replying with the socially acceptable script.”
“Absolutely. Now can you talk about working in the educational system. Because my experience as a kid in the educational system in Israel was completely inaccessible. And now as a parent, looking into putting my child into the schooling system in Australia, and I’ve been to a couple of school tours. And I was triggered particularly in one of the schools that I went to, because it was so inaccessible that I was just, really upset.” Laughs.
“Yeah.”
“That it’s been, I am thirty two next month, and accessibility is still something that we have to fight for in the education system. So, that was a long story to ask you – how has it been working with what you describe as an invisible disability in that system?”
“It’s been pretty tricky to navigate. I spend seventy percent of my work days in a place where I am not cognitively functioning very well. These are days when I can barely string two sentences together, and I have to show up and be professional in front of the children, and be a together, fully functioning human adult, and I’m just not. Ah, they don’t know that, thankfully. Both laugh. The children’s welfare has to come first, which I totally agree with, and I think that’s, that should be very obvious to anybody who works in education. The issue is that working a job like the one I’m working, compromises my own welfare. Specifically navigating all the different school cultures and rules, also overarching workplaces. I work for multiple schools under the umbrella of a couple of different organisations. And it’s like, I’ve got the workplace who sends me out to the other workplaces, who all have their own rules and stuff. So I’ve got like ten different sets of rules to deal with. At its height I think I was going to eight or nine different schools a week.”
“Wow.”
“And I was working for two difefernt companies and one of those schools, I was freelance as myself.”
“Very complicated.”
“Yeah. There’s a lot of unpaid work that goes with that employment structure as well. Every business that you’re working for expects you to be doing all this unpaid admin and it kinda comes under the umbrella of – but you’re a musician, you love it. You should feel lucky to have this job because you get to work with music.”
“I don’t even have enough understanding of the system to say anything that would make a lot of sense. But I do have a few friends who are teachers in Australia, and I found that it gets me really angry when I hear about the amounts of unpaid work that they do. And all of those friends are females, and something about the fact that this is a mainly female field makes it possible for this to still happen. And I think that for you being a musician and being a woman with a disability on top of that, it is kind of another layer of marginalisation in a way.”
“It’s nice to hear from somebody whose not working in education that it makes them angry too, cause it makes me incredibly angry. In some regards, I am lucky that I’m not a salaried employee, employed through the department of education. Because the workplace those teachers are expected to take on out of school hours is pretty gross. Because I’m a casual employee, now that I have started putting my own welfare above my ability to stay employed, it’s been a lot easier to just say not my monkeys not my barrel.” Laughs.
“Nice.”
“Hasn’t gotten me into trouble yet which is nice, but I’m waiting for it, I’m waiting for the trouble to follow.”
“I bet. And one thing that gets me very angry with that as well is, I have friends who are in I guess a senior teaching position, and in order to remain in those positions they have to also engage in extra curricular activities that occur at nights and weekends.”
“Yep.”
“And as a parent, and as a disabled woman, I just feel so suffocated by that concept to be honest. Giggles. Because it is so ableist to say you have to be there on a night, after you’ve worked all day, and also you get paid for three days, but you actually work six days of. How is that ok?”
“Yeah.”
“It’s very ableist.”
“I agree. The department almost expects to own all of their time. Which obviously for anybody who is disabled that doesn’t work. It also doesn’t work for parents. And I just think we lose valuable diversity. Everything starts with education. It’s how you shape generations and it’s how you shape the future of humanity. And it’s such a cliche, but it’s a cliche for a reason.”
“Yep.”
“And how is the disabled kid in year two suppose to shape their career if the only other adults they see other than their parents are teachers, and all of their teachers are young, able-bodied, and in some schools they’re only white teachers too.”
“Absolutely agree. Now as a parent, have you got any hope for me?”
“I do.”
“Ok, laughs. Tell me about it.”
“If you can afford it, my recommendation is ah, send your kids to a steiner school.”
“Really? Ok.”
“They’re the only place where the teachers and students aren’t miserable.”
“Right. Um, any hope in the public system?”
“Not that I can tell.” both laugh.
“No? Ok. next question. Both laugh. I am wondering, one thing I didn’t ask you about is Jen, is what does intersectionality mean to you?”
“Oh, I love this question. It’s such a great question.”
“Thank you, I wrote it myself.” Laughs.
“I love it. laughs. To me, intersectionality is consciously observing and accepting that the world is a very complicated place and using that observation and acceptance to build a world view that encompases all of your knowledge and changes as your knowledge changes.”
“Beautiful Jen. Now before we finish, can I just quickly ask you about your fashion, because you make incredible clothes. Can people buy your clothes, are you making them just for you, what’s the main inspiration at the moment, tell me about it.”
“Oh, thank you so much for asking about this. I think everybody has that tiny little space in their brain that’s like, here’s a job that I would like to have that’s out of my skill set, and I know I’ll be really good at it, but there’s, I’ve got no hope in ever having that job. For me that is being a world-famous fashion designer.” Laughs.
“Oh, I love it.”
“There’s a big part of me that wants to do that, but then when I think about all of the time I would have to spend not studying music I’m like ooo, ooo but do I really want to make that sacrifice? Liel laughs. So at the moment the compromise is to make my own clothes. And then, I do all my own photography as well. I am very slowly working towards releasing my very first line of skirts. I’ve got four skirts half made. I’m waiting for the energy to finish them. But the idea behind these skirts is, they are skirts that will change size with you. so.”
“Oh, wow.”
“There’s a component which the wearer has to stitch on themselves in the place that it fits them best. And then if your sizing changes, you just move the components and the skirt still fits. And you’ve got like 30 centimeters of leeway.”
“That’s amazing”
“Either way.”
“Ah, I want that skirt thank you. Where can people find all of your beautiful writings, and fashion, all of those things?”
“My website is the centre of my creative universe. Laughs. It has all the links to all of the places I exist on the internet. And the address is https://theemeraldruby.com “
“Yes, I will link that in the show notes so people can just click on that straight away.”
“Under that name, The Emerald Ruby, I’m also on Instagram, Facebook, Spotify, Twitter, lookbook.new.”
“Was there anything that I didn’t ask you about that you kind of wanted to raise, or anything that you wanted to ask?”
“We have covered a lot in our chat this evening.“
“Yes.” laughs.
“I think that the only thing I didn’t get to speak about. That a lot of the issues surrounding disability and then also race issues and women’s issues, in Australia at least, are easily solvable. And the people in power have made an active decision not to solve them.”
“What do you think is the most crucial part of, of the answer to those issues that you’re talking about?”
“Just for governments to acknowledge that a lot of the systems they’ve put in place actively keeps people from seeking the support they need. And that my dismantling those red tape systems not only will a lot more people get the support that they need, which then in turn makes them into the workers the government would like to see, it also opens up a lot more job opportunities for everybody, because if you’re properly supporting people, there needs to be people to fulfil those positions.”
“Thank you so much for coming to (Un)marginalised Jen, it was fantastic.”
“Thank you so much for having me on.”
“I like to respectfully acknowledge the traditional owners of the land on which I’m recording the podcast, the Warranjri people of the Kulin Nation, and pay my respect to their elders past, present and emerging. As we tell our stories, I want to highlight that traditional owners of this land have been storytellers for generations.
This was the final episode of the first season of (Un)marginalised. I will be releasing a bonus episode in the next couple of weeks to my Patrons only. To access that, make sure you join on www.patreon.com/LielKbridgford or just click the link in the show notes. That way you can access the bonus episode and content, and make sure there is a season 2 of (Un)marginalised. Don’t forget to subscribe, rate, review and share the podcast with all of your networks. Thank you for listening. This was (Un)marginalised, and I am your host, Liel K. Bridgford. Until next time.”
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April 29th 2021:
(Un)marginalised: S1, E5 with Julie G. – Episode Transcript
“Shalom everyone, I’m Liel K. Bridgford, and this is (Un)marginalised. My next guest is Julie G., a disabled woman from the united States of America. Julie is a care coordinator, and a mother of two. Before we begin, please note that the next episode contains references to ableism and body shaming, so please take care as you listen. So Julie, to start our conversation off, do you want to tell me and our listeners, which intersections of diversity do you identify with?”
“I identify with you know, being disabled, and um, growing up very poor. And not having access to good medical care and um, not having any education to point us to a direction, for you know, help with the disability. So being poor is a problem. And, even though there are options out there that may or may not pay for, specialists, if you don’t have the education you know, available to the person, I mean to the family who you know, works night times, sleeps all day, and doesn’t have time to go call you know, the social services to find out what, or even that you can.”
“Yeah.”
“So how do you reach that? You know my mum was, she was a single parent in the seventies, laughs. Still, not a good thing, you know, so.”
“Right.”
“So um, grew up away from her family, um, you know she raised me with my elderly grandparents, so she had to care for them, and me, and you know, here I am, disabled, and she’s trying to figure it all out. She’s got a high-school education, someone who probably needs guidance, you know, you would think. You know in a hospital, like now, I feel that there’s social workers in hospitals where you have babies, that would point parents to directions. But in the seventies, that may have not been a thing. And it may have been something, we didn’t know and I still don’t know if that was there.”
“How do you think all of that affected you as you were growing up as a girl with a disability.”
“I grew up with, my mum found services by finding out from somebody else who like, knew somebody else who had a kid that no one talked about. So when I was born, she didn’t know what to do, so she had initially gave me up to the system, in foster care. Cause she didn’t know what to do. She’s like, how do I care for a disabled child, no knowing how the disability was going to manifest itself. The doctors were like, yeah your kid is not gonna walk. And who knows what else, you know, maybe she’s intellectually delayed, who knows? We don’t know. So but then she decided you know what, I can’t do it, so she got me, and tried to figure it out. “
“Wow. how long were you in the system for Julie?”
“Probably almost the first year or so of my life, in and out. Because I had, initially been placed with different families, but of course you know, no one wants a disabled child. I ended up having a foster family who my mum then kept in contact with. They knew how to like, find services, because they were in the system.”
“Ok.”
“So they steered my mum to a hospital. That was kind of expensive. It wasn’t one like, I don’t know if you ever heard of Shriners, that they would pay for things. Well she didn’t know about that. That, they had one in my state, but she didn’t know about it. “
“Wow”
“So you know, we went to a, you know fee for service, pay as you go, um, billing. And my mum made like minimum wage, co pays were very expensive. So she found a doctor there, who was surprisingly you know, knowledgeable. He told her maybe she’ll walk, maybe she won’t, there’s no way to know. Followed you know. so we would go there every so often to get checked, x-rays, see if things were growing. Everything seemed to be growing so. But again, my mum had to buy two different sized shoes, one big one, one small one. One built up like you, some heavy like wood like build up. You walk around like wow, this is gonna, I’m gonna have a strong leg or I’m gonna throw out my back.” Both laugh.
“Cause obviously I did walk, I learned how to walk. The thing about disbaled people I find is the interesting ability to adapt. What a typically abled person would be able to do, is, you know, and the way that they do it, you know is a model for how we might do it, but we figure out the way to do it for us. So, it’s normal for me to walk how I walk.”
“But I absolutely agree, just because of the absolute necessity, that you know, the services and the supports not there, and we just have to adapt. Physically, emotionally, psychologically, with everything. You know that’s really so good that your mum found that family that family, that were able to direct her into a service that was able to give some kind of support.”
“I mean something is better than nothing. So that’s kind of like why I was drawn to my work, to what I currently do. I’m a care coordinator and I tell people who elderly disabled, from birth to a hundred and whatever, what services are available in the community, and what is supported by your insurance, what is community supported, and what charities do what services for whatever your individual disability might be.”
“You’re doing this work, that you’re almost correcting what wasn’t there for you and your mum.”
“It’s true. I find that I’m very unsympathetic to people who go oh, I didn’t know. And I’m like really? It’s 2020s, like what is not on your iphone. Do you not, tell me then. If you know me, I’m gonna tell you what you need to do or where you need to go. I’m not a big fan of people who, say panhandle. You know what panhandling is?”
“What does that mean? Tell our listeners in case someone doesn’t know.”
“You know people who say would hold up a sign saying out of work, or you know disabled need help. And I’m just like really? Are you kidding me? There is a shelter, there are multiple churches who will pay for you to get a hotel until you get something, social services who if you’re a minor, you’re not going to be homeless. You’re going to have all of your needs provided. And I feel like you just want my money. I was walking into a restaurant and someone’s like can you spare money? And I was like are you kidding me? What do you need, tell me what you need. They’re like I need help. And I was like do you really want me to help you? And they’re like yes, and so, how old are you? And they’re like well, you know I’m sixteen. And I said ok and I called um, child protective services. And they were mad about it.” laughs.
“Oh really?”
“They were trying to just get money. They didn’t want help. And I’m like look, if you ask me for help, this is the help that you’re going to get from me. You are going to learn how to help yourself.”
“And sounds like, I mean, what I’m reading between the lines a little bit Julie. Is that you’ve had to kind of help yourself so much. And I know what it feels like, we share, um, in case our listeners kind of didn’t maybe catch on that, we share the same medical condition that we were born with. But sounds like it sort of leaves you feeling really, um, maybe a little bit angry about some people not taking the effort?”
“Yeah, if you are able-bodied, with two good feet, two good legs, why are you not working? Because I know that there are jobs out there for you. And if you speak a different language, well good for you, you’re bilingual, you’re one up on everybody else. People need community supports to get them to a point where they can help themselves, and that’s fine. They don’t need community supports if there’s something for them to be able to help themselves, to find their own answers.”
“And I’m wondering about, when you do the work, do you ever talk about your experience with your clients, or the people that you support?”
“Not even one time.”
“Really?”
“No. I always find that people don’t want to hear about your troubles, as much as they want to tell you their own. So I don’t. And typically it doesn’t come up. Um, if someone says to me oh why are you limping? I’m like arh, at my age, I’m like arthritis, cause that is not a lie. Like why are you asking me why I’m limping, did I fall on a hole? I don’t know, I don’t ask you why you, well I already know cause I. No one asks anybody else typically you know so how are you. When they say how are you, they don’t want to know how you are.”
“No” laughs.
“It’s like a hello. If I said you know what my back hurts,”
“Exactly”
“I got limb discrepancy that throws out my back, a couple of surgeries, what do you want. What are you looking for, oh just a hellp, oh ok. “
“A hello or to ask you why you’re limping. Because my limp is kind of changing, and you might have the same experience, like sometimes I limp more than other times, depending on pain levels and whatever.”
“Depending on the day”
“On the day. So sometimes if I know people who don’t know about my disability, then I limp one day and they notice it, and they’re like oh, what happened? Laughs. And I just think, ah, I was born, that’s what happened. laghus. “
“What happened, like a shark ate my foot. I don’t know. Like when I was a kid I would just lie and say shark, you really need to watch yourself in the water.”
“Oh I love that, that’s great. And tell me about, you mentioned with the kids, I guess that’s what you use to tell kids. And I love that response. So much better than miy responses, which were kind of non-existent or I would try to explain myself and say I had a leg problem, and I’m putting quotation marks around that, cause that’s what I was told, that I had a leg problem. And that’s how you know, you can understand, how you internalise yourself as being a problem.”
“Yeah.”
“Tell me about growing up I guess with other kids, with your peers, what was that like, being a girl with a disability who didn’t have enough supports as well in terms of medical and other services.”
“Well, I grew up with a bunch of other poor kids. You know, in our area of Pennsylvania. It was very rural. Everybody was like a farmer or worked at a steel company. You know, no one that I went to elementary school with had any money. You don’t really know that you’re poor when you’re a kid except for at christmas when Santa doesn’t like you as much as the other kids right? Oh he likes that kid better, oh I really, well he must not like the disabled kid. “
“That’s what you used to think?”
“Well who knows, why would santa not want to bring me a toy? But some other kid gets 50? I didn’t even get socks. I’m like what the? Wow. And I’m not even bad, I wasn’t even a bad kid, I’m like I might just go start setting fires or something, you know? Laughs.
“yeah, might as well enjoy it.”
“You know, obviously gym class, not a big fan. Still not a big fan. And because I grew up like hating that kind of thing, I’m still not a big fan of the group sport. You know, always the last kid picked. So always fun, letting people pick their own teams that. Never good letting people pick their own teams, you know I think that instructors should just evenly have teams picked, so that people don’t feel bad.”
“So you did participate, like you obviously didn’t like the gym class, but you still participated. You still kind of, were expected to participate like everyone else?”
“I was expected to participate because, when I was a kid of course my mum didn’t know, or if there were IEPs, she didn’t know how to get one. No one said anything. Special needs gotta do gym class because that’s the law.”
“Mmm, that was the law. Ok. “
“You gotta take PE. oh why, why do I have to take gym, why do I have to take gym class, I’m getting pelted with balls, which by the way, I’m not a big fan of the ball, not rubber or otherwise.”
“Me too Julie!” Julie laughs. “I have had a ball phobia almost my whole life” laughs.
“If you have a ball around me, I’m going the other way.”
“Seriously, that is incredible, I feel so validated knowing that I’m not the only one who hates balls. Both laugh. Honestly, like any ball within like 100 meters from me, I’m like ah, it’s gonna hit me.” laughs. “And it’s gonna hurt”
“All of them do, like somehow they find me and get me. Because I can’t get away. I’m not catching a ball. Liel laughs. I’m trying to get away from the ball, right?”
“I know, my two and a half year old can throw a ball and catch it way better than me.” Laughs.
“Of course.”
“I love this conversation and I’ll tell you why. Because some podcasts and stories out there about, you know the famous disabled people are usually like Pralympians, you know? And that’s great, good for them, but some of us, that was, you know, a lot of us didn’t have that experience. You know a lot of us.
“A lot of them had resources, doctors who made good choices about surgeries that they may have had. Wheres us, me, they were experimenting, they’re like lets see if this works. This might work, I mean what are you gonna do, I can’t mess it up anymore. So you know, kids are mean, you know, I’m still not a fan of the big tough girls.”
“So I’m really curious Julie how you went from, cause I mean we haven’t talked about that yet, but you’re married now with two adult children. But how did you navigate sort of the I guess, getting into the romantic world, all of that kid of area that starts in adolescence which is such a hard time for most people as it is, what was that like?”
“In high school, like I didn’t have my first date until i was in eleventh grade, I think. And only because, well late grower, late bloomer, no boots until like you know, maybe twenty. Always skinny, always, you know wanted to always have like cute hair, tried to wear clothes that like the rich girls wore you know, or at least what you can buy at like walmart. And so I got a summer job. There was a program in my community, and I don’t know what it was. Because I didn’t come from a lot of money, you know they had these summer jobs to try and give you a skill. You know, cause poor, probably not smart, right? And you know, the weird feet thing. You know I had glasses, I had braces, you know, the hideous foot, so you know, hideous child. So.”
“I disagree, but that’s how other kids were viewing you. And in high school that’s really a harsh time in judgement.”
“Yeah. I got a job, I paid for contact lenses, got the braces off, and bought cuter clothes. And two pairs of shoes. Like a pair of snickers to fit in at gym class. And a pair of brown shoes for everyday, that would you know, deal well with my hand made, cause I wasn’t doing the whole shoe thing. I bought like the same size shoes, I think one foot would be a size three and one would be a size five. You know i’ll just stuff it and we’ll figure it out. As it doesn’t feel good I’ll adjust it. I had to reinvent myself. Then like my school, it was so small that the county then merged two school together. So then suddenly there’s a population of guys who didn’t know me when I was hideous right?”
“Oh wow.”
“So then I started dating, you know the new people right? So not a whole lot of dates in high school, no real big leads there.”
“Yeah”
“But didn’t aim real, you know. So here’s like a weird thing. I did not want to date anybody who would not be able to give my children a better life. So if i didn’t think you had earning potential, ah. Even though I shouldn’t be all that picky. So, went on to college, had some serious relationships there. And each one of them, you know, it was very stressful to tell them my big secret. Because they didn’t know, they just. So i mean i would dae them for months before i would tell them.”
“Really? You were hiding it for months?”
“Yeah, because you don’t know worthy of love that you are. Are you worthy enough to be loved enough to tell someone who would accept you for something quite so hideous, as being born, you know, differently. So it was soo stressful, I would cry and everything before I would like even tell anybody. But, you know, was accepted. So I was like ha, who saw that? Laughs. Right?”
“I have such a similar experience and I think it’s something that maybe a lot of people who don’t have disabilities, able-bodied people don’t really understand what it’s like to kind of have to hide, or feel that you really have to hide. And that comes from all those years of being excluded and bullied and not accepted. And then accepted when you were hiding enough or well enough and passing as an able-bodied person. And that puts so much pressure on you. That would have put so much pressure on you as a young person in college, just dating, figuring it all out, and then having to also manage that.”
“After you know, I found, I met my husband in college, we got married. I still didn’t tell other people. You know, I would still wear clothing, and jeans, and not. I’m not wearing shorts. And the only way I would say, do I water park, is if you know you would have those shoes that cover your feet, but then you know, having a baby, everyone’s like oh, are you gonna pass your, you know, thing, onto your children. And I’m like, well I hope not, but. So then you know, you do like genetic testing, and suddenly someone says oh you have this. This is the term for what you have. It’s Fibular Hemimelia. And I’m like ha, who knew? So there’s a word for it.”
“Really? I only found it the name of what I had when, um maybe like two years ago, and it was just by googling.”
“Yeah, no one knew, there’s like no treatment other than what whatever my surgeries were as a kid. I don’t know that there may have been lengthening back when I was a kid, but we didn’t know. Or maybe I was a candidate, maybe I wasn’t. I don’t how that process is to exclude or include people for that process. But now, at my age, I’m like, not gonna do any of those things. Now i’m just trying to get through the day and not fall on the ice.” laughs.
“Yeah” laughs. “Oh I can’t even imagine ice, like i’m really grateful that I live in Melbourne and there’s no, oh well, rarely there might be some hail, but no snow here. And of course, I’ve done, for the record I’ve done probably about ten lengthening and straightening procedures, and they are horrible, so I do not recommend them.” laughs. “And as you say, you’ve got other priorities in your life, and I think that’s such an important point. Right now you want to live your life, and not fall on the ice, and spend time for your work, spend time with your family”
“Yeah”
“Like the last thing that you want is to into an operations that are not necessary, um, and I think that kind of comes to the idea of having to fix us. You know, that people kind of see it that way, but.”
“Last fall I slipped on a wet leaf, and broke a bone in my weird foot. And the doctors that I went to see were like, I guess we’ll just let it do what it does. And I was like, alright. They didn’t put a cast on, so I just had like the soft cast and I would take it off at night. And I just hopped to the shower. Laughs. But literally, slipped on a wet leaf.”
“I totally identify with that. I slip on the littlest things. Like a tiny little puddle, or even like a different surface of the pavement.”
“Do you walk looking down for objects to?”
“Yes! Oh my gosh, I feel that I cannot change that about myself, I’ve done it ever since I can remember walking, I’ve always looked down, because there’s always slipping hazards, and I’ve walked with crutches most of my life, and I’ve slipped so many times with crutches, and on my unstable feet. So I just walk like this, looking down, just to explain to listeners, because yeah. And sometimes I think oh i really wanna look forward, to see, like look up and see what’s kind of, the view. So I have to stop and do that.” laughs.
“No, I can’t walk and look around, unless I’m holding onto my husband’s arm.” Liel laughs. “Like you can’t grip with your foot, it’s just like.”
“Yes.”
“You’re just walking around, teetering.” laughs.
“Totally.”
“And like hoping for the best with each step and you’re like well, you know, I don’t see any hazards, but there could be a rock, or yeah. Not running through the field.”
“Yeah.”
“And also, you know, there could be a bug, so.”
“Even in my own house, I slipped the other day, I slipped on nothing, just the floor. There was nothing on it and I just slipped.” laughs.
“Yeah, doesn’t even matter. Like, but see but no one knows that. You know I threw my back out because, I feel like my limb difference when I have my shoes off at home, is starting to be a problem. So this is where the advantage of maybe having lengthening would be. You know, but at this point. You know, it’s already happened. So now I have to be extremely careful because now, every time I get out of bed I have to pee. I’m like, oh how is that feeling the back.”
“And I’m curious about, when you say no one knows, and we talked about hiding a lot. And we also chatted about your work a little bit. But how has it been with work. Have you found that you had to tell people? Do you feel that the workplace environment that you’ve worked through has been sort of accessible and accepting? Or what’s it been like?”
“With my job, we have a home office. So.”
“Yeah”
“So all of my coworkers are you know, on the other side of a screen. When I get a new, we call them members, I go to their home, and I do their medical assessment, and I tell them what resources are available for their particular concerns, or what we can offer them, or what they can get in the community. And going into their homes, the hardest thing that i find is if they have a front stair with no railing.”
“Yes.”
“It’s really very hard to do. Yeah. But everything else I can manage. And just say you know I’m carrying my briefcase, or whatever, my. But you know, going up those stairs without hand railings. I’m like, who would think of something so horrible?”
“I’m so relieved that someone else feels so strongly about stairs as me. Because I have had such difficult times with stairs, like there have been no elevators in my school when I was growing up. So I had to walk up like stairs of, like staircases and staircases, with crutches, and with a massive leg brace that was heavy and painful.”
“Yeah no one cared”
“No one cared” Julie laughs.
“Still these days. Like yesterday I went to um, a little town here in Victoria called Queenscliff and I went to like at some art galleries and things. And almost every shop in that town has a step at the entry. And I just find that heart-braking, honestly. For so many people, who like us, either would struggle, and for other people who wouldn’t be able to access it at all. If they prefer to use wheelchairs, or walkers or whatever mobility aids they want to use.”
“Yeah, They’re not getting up there unless someone else helps them do it. And if you’re in a wheelchair, you’re not getting in at all.”
“And for you I imagine, that even, so tricky for you with your work, because obviously people’s homes don’t have to be accessible”
“No, they don’t.”
“But you have to go to do the work. You basically had to push through.
“You just have to adapt. And just a little bit, enough to you know, I don’t need a lot, but I just need a little something to hold onto. Or sometimes I got my hands on my knees and really kinda. But it’s really, it makes me want to punch people in the face really.”
“It’s absolutely unnecessary, you know it’s just as easy to put a little ramp or a, or make a little hand railing at the very least.”
“Just a hand railing, like how hard is that? Like I’ll build it for you if I have to. I mean cost you what, like 500 bucks maybe, and then you make that back by people who could actually come. The thing about being here in the United States is that, businesses are required to be accessible. They have to have a ramp or something. But those ramps, some of them, I’m just like, I’m just gonna take the stairs. I’m not going all the way around to the side to walk up.”
“Yeah”
“I feel like even the ramps are put on as not even so welcoming. I don’t feel welcomed with the ramp. I feel like it’s a, we had to put it on and we didn’t want to mess up the front of our building, so we put it here on the side. And you can go in this entrance. And there’s accessibility here for you, and your needs. But welcome to our shop. And I’m like hmmm.”
“Yeah” laughs.
“Like really? Just make a welcoming entrance.”
“Exactly, absolutely.”
“You know, not one that you just put on because you know, the state made you.”
“And I mean it is a start, so we will acknowledge that it’s better than nothing, but absolutely needs to be welcoming, and not to be on the side. We have that in some places here too, where there’s a beautiful entryway through the stairs, and then there’s like a sign of a wheelchair to go to the right and you have to go all around the corner to get in. As if you’re like you know, hiding to go in. And I want to go through the front door. Giggles. Through the front entryway, with pride.”
“Like I get passive aggressive and I’m like oh my God, the stairs, right?”
“Yeah.” Liel laughs.
“Or they go oh how was your visit? And I go argh, you know, I almost fell down those stairs coming you know. They’re not very welcoming to people who are disabled.”
“That’s incredible that you’re even able to say something, I think, you know advocating.”
“Only since I’m old” laughs.
“Ok laughs. “Yeah, what’s changed, since you’re old?”
“What’s been very unpleasant is. Like when, when you’re disabled, everybody’s like oh, go to the gym. Go to the gym, oh you can lose weight at the gym. Well you know that’s all nice, that’s great. So good for everybody to be able to go to the gym. But I, I gained like 40 pounds in the last year because I haven’t been able to do anything, you know because of two back surgeries. And then you know it starts to get back up. Losing it. It is not easy to find a way to lose eight with the options that we have to work with. You know, you could do Pilates, and Yoga, if your feet will bend that way.“
“Yeah.”
“So, you know, or people did zumba. And I’m like, I can’t do that kind of like pounding with my legs. Sounds lovely, but, looks lovely for you to zumba all that time, but can’t do that. oh, let’s do the exercise bike. You know I have short legs, one may, you know, be a little shorter than the other one. So now I’m like exercising, you know riding with a limp.” laughs.
“Riding with one side, totally.”
“And I don’t want to stand in here, with you all, while you’re lifting your weights. Because you can only do. Like you can do all these”
“Upper body.”
“If your issues are lower body, if you have something that would affect you arms, then what do you do? But you’ve got to be able to stand for a certain amount of time. You know what I mean?”
“Yeah. Absolutely. Which sometimes we can’t, sometimes we can but it’s damaging. Because what we’re talking about is quite a lot of body shaming, really. And you know, that is, as women, that is something that we deal with so much more.”
“Yeah”
“Like, our bodies are being scrutinised so much more.”
“All the time. You’re not pretty with your ugly leg. Gym workouts, not exceptionally user-friendly. You can get into the gym because there would be a ramp, but what are you safely able to do? You know, and the trainers don’t know. They don’t know what you can do. They’re like, you do a leg press. I’m leg, no. Liel laughs. Are you kidding me? I’m like.”
“Sorry, I laugh because you know, I experienced that stuff too. Of like, able-bodied people, and like trainers, and like exercise teachers, all these people that think they can tell you, and think they know what you can do, and what’s safe and comfortable for you to do. And it’s like, ah, no. actually not. And that pressure. That sounds like a lot of pressure for you, you know, people telling you you should do this, you should do that. And maybe. Firstly, maybe you don’t want to, and that’s a fair choice, especially. But also maybe you can’t because services, or the facilities really, are not accessible.”
“Everybody’s like well go swimming. And I’m like in a public pool, where everybody’s around, you gonna walk in front of them. And they’re going to be like oh look at you, with the leg. Or if it’s easy to get in and out of the pool, fine. But then if you want to get in to the deep end, you either go down like these narrow stairs, you know, and use your toes for support, because you know, cause everybody has those. But if you want to get into a pool, typically you gotta go through the little kids section. And walk through. And I’m like I’m not walking past those kids, I didn’t really like them when I was that age. They’re lovely, I had kids, they’re super. Get into the pool and walk through a bunch of kids asking me questions. And then they go Mumma, what’s wrong with that lady? And she shoes shhhhhhh” Liel laughs.
“Yes.”
“Shhhh. Why are you shhh? I can hear you!” Liel laughs. “Now like, the kid has just outed me. Just say you know what, maybe she, you know, something hurts, or whatever, but we’re gonna mind our own business. You know, we’re not going to put her on the spot because we are nosy.”
“Yeah, absolutely”
“Or go shhh, because that’s very shaming”
“Absolutely, and it’s also. It implies so many things. It implies that we can’t talk about disability. It implies that you know, what you’re saying is really shameful, and what you’re asking about. And you should only talk about it behind a person’s back.”
“Yeah”
“I think there needs to be so much more conversation about good ways to talk to children about disability, and I’m a big fan of that because I’ve got a toddler too. And, I’ve had the same experience as you with kids, and you know, that fear of being teased again and traumatised again by questions and stares, is massive.”
“And at a certain point you don’t want your kids to be traumatised or shamed because their mother might be weird.”
“So what was it like for you Julie to become a mother? You know we chatted before about the initial reactions from people, shaming you again, and asking if you’re gonna pass on.”
“Again, I’ve learned not to disrobe you know, in public. I signed all my kids up for every single sport.”
“Did you?”
“I made them do everything until they could figure out what they were good at. Which, they weren’t good at a whole lot of sports. They were good runners. So every sport, and they had to have a club. You know in order to play video games or do fun things. They had to. And I made them play an instrument. Because you want your kid to be better than you, and have the opportunities that you may have not had.”
“Absolutely, and that’s incredible that you were able to do all of that for them. You know, provided them with so much, opportunities.”
“And, like I didn’t let my disability hinder their life.”
“Of course.”
“You know, I adapted myself to whatever they were good at. If they were good at cross country, and they were running, you figure out where is the best spot to watch them. I’m not rushing across the, you know.”
“Totally.”
“You know, I’m sticking over here, with the old ladies, and we are gonna chat until my kids runs by.”
“And how did you find with, connecting with other mums and other parents. I guess, yeah, how was that?”
“I’m typically very, I’m very outgoing, friendly, chat with people. You know I sit with people. Cause of course being disabled, no one wants to sit with you right? So I will sit with the person no one wants to sit with. I found myself when I was younger not wanting to sit with that person, the person who might have been considered ugly. Because you didn’t want to have any fingers pointed at you, right? Then I felt, you know what, like, I don’t want to be around people who make me feel that way. That I don’t want to sit with someone, who might be a wonderful person, but may not fit the stereotypical loveliness. So I try not to do that. I try to find the person. Cause you know, that could be me again some day, that someone doesn’t want to sit next to. Like I try to include the guy in the wheelchair instead of excluding them. They may not speak clearly, but you just listen. You know sometimes people have to listen, and stop being selfish.”
“And you know you and I met on an online group for FIbular Hemimelia. And I was the same, I have not met or even conceived in my mind they were other people like me.”
“I feel like all of the people in that group who have interacted are like, they know my heart song.”
“Yeah.”
“And when they things, I’m like, yes! Where have you been all my life?”
“Exactly!”
“Where have you been all my life? Can we all hug? Can we?”
“Yeah”
“Can we just go to a handicap accessible building, get our nails done and sit at a pool with our feet out?”
“Yes, that is what we are going to do once COVID settles.“
“I want to get a pedicure. “
“Yes, we’ll get a pedicure together.”
“I’ve never gotten a pedicure, because I am ashamed of how my feet look, and how. I don’t wanna deal with how they are going to perceive”
“You know, I’ve struggled with that, wanting to get even my hair waxed and things like that. As a teenager and as a young adult. I just felt like I could not go to anyone to do it, because I felt way too ashamed , because of judgment. And actually once, and i’ll tell you this story because you would understand, um, and maybe our listeners might understand once they hear it now. Laughs. Um, I went to a beautician once. I think she was a masseuse/ beautician, and I got this voucher from someone to go to her. And she gave me like a massage, and I had obviously taken my pants off for it, something that you feel so self-conscious of as it is as a teenagre. And then she saw my legs and I waxed my left leg, but I didn’t wax my right leg because the skin was so, is still, so incredibly sensitive there and it’s really painful to even touch it, after about 19 operations, something like that. And she laughed. She laughed at my hair. And she said why don’t you um, you know you need to shave this leg too or something like that. And she laughed at me. So, those kinds of things happen, and I think people need to understand that we are not scared for nothing.”
“And you don’t forget that”
“Yeah you don’t forget that.”
“Like that is not that you just shake off and keep going”
“No, exactly.”
“You think about it all the time. Like on a Tuesday at like one in the afternoon, you’re like I really wish that person wouldn’t have done that”
“The long lasting impact.”
“It does, it’s very long-lasting. Like, I’m a cranky adult now cause I feel that I’m just like, I might be more sympathetic towards people if people would be more sympathetic towards me.”
“Absolutely”
“Cause I don’t’ have sympathy, when people are like oh, my ankle, my feet hurt. I’m like laughs. Your feet hurt, that’s adorable. Is it? Liel laughs. Really? How do they hurt? Let’s chat about that, cause when I walk for a long time, like at an amusement park when i was younger, boy for two days I would be like hubbled around. And I am not going to go, when I was younger, I wasn’t going to not go to the amusement park, I was going to the amusement park. I was going to be a typical person. I find that my mental health is cranky. I find that you know, the accessibility isn’t done gratefully. Like they’re not happy to make, like places are not happy to invite the disabeld. Like there’s a ramp, so what more do they want? You know I still feel unwanted. Like, well I guess you don’t want my money, and I spend a lot.” Liel laughs.
“That is such an important point, and I think businesses fail to realise that we are a spending potential for them that they are missing out on.”
“Yeah, if I don’t feel very welcomed, I’m probably not going to buy something there.”
“And on the contrary, I know that if there’s a place that I do feel welcome, I would spend money there, again and again. And I would spend more.”
“Every day.”
“Every day, exactly! So, for any businesses out there, be welcoming, it’s worth your money, and not just with a ramp.”
“They don’t know who’s disabled. They wouldn’t know just looking at you. I find that nothing has really changed.”
“In the attitudes?”
“Nothing has changed to me. Like people will say that they do to the point where OK, fine, you’re accepting. Jees, like make me feel bad about it, but you’re not.”
“Yeah.”
“Cause you wouldn’t be making an issue of it. Like you don’t bring up somebody’s disability in a conversation unless you’re like, unless it’s a friend of yours, and they’re like I have stairs, do you want me to turn on the light and, something appropriate.”
“Yes.”
“Don’t point out, that oh look I have a ramp for you to use. Well, I see that.”
“That’s the thing as well, like they are seeking”
“Our approval.”
“Approval, and like brownie points, like they’re seeking like a well done, as if they’ve gone above and beyond, when actually forgetting that accessibility is everyone’s human right. It’s not a privilege that some people should get. It’s a human right. Everyone deserves to have access to all the services and facilities that everybody else has.”
“In America, I expect to be able to access every building. If I go to Italy, well then I can’t except it, because I’m not a taxpayer there. And, I’ve been to Italy, and they’re relay not, because they have a lot of old building and they’re not happy to mar them with a ramp.”
“That’s what I’ve been told about the town that I was in yesterday that I told you about. They’ve commented on my post on Instagram and said the heritage overlay, which is the rules about the old building, prevents them from changing the building. Giggles. And I’m like, that’s not a good enough excuse”
“It’s not a good enough excuse. Also there are portable ramps.”
“Exactly.”
“Everybody should have the similar. They wouldn’t like it if they couldn’t access something. “
“And that’s the thing about disability, and I think people forget. Anyone can join us disabled at any moment. “
“At any point, a car accident, a fall. We include everybody in our ranks, even though you don’t wanna be. “
“yeah”
“No one wants to join us”
Giggles “Exactly.”
“And as you say, like acceptance in little and big businesses and services as well. Maybe we can get a sponsor for nailpolish, and I’ll do a pedicure and put it up on my Instagram”
“Do it together.”
“Do it together, and let everyone know that feet don’t all look the same, and not everyone has five toes, and not everyone’s toes are the same, and not everyone has ankles that move, and all of those things. Both laugh. Or ankles, I don’t even know if I can call mine an ankle, a little bump.”
“Exactly. What we have is like a bump.” both laugh.
“On that note Julie, and it might be putting you a little bit on the spot, so no pressure. What does intersectionality mean to you?”
“It’s not a positive thing, being intersectionality, if say you are a beautiful tall blonde, and you are rich, and you are intelligent. That’s a positive intersectionality. I think terms like intersectionality are used when people are marginalised. You find words to describe your different um life views by saying, well, I’m this way because I grew up this, this, and this. They’re not that way because they didn’t have to grow up this this and this. But I’ve had all of these barriers. Intersectionality is barriers to succeeding, rather than positive to succeeding. You know, where I fit in on the sides of the intersection. I am still on my intersection. And I’m trying to cross over, but I will never be, you know, able-bodied. And the older I get, the less able-bodied I’m ever going to pretend to be.”
“Exactly, well said. I love the way that you explained that, and I almost see it as layers of barriers.”
“It is.”
“Julie, it’s been such a pleasure to chat today. Thank you so much for coming to (Un)marginalised.”
“I hope that it was what you were looking for. Like I feel like you already know all of the secrets.”
Laughs. “Yep.”
“I feel like if we wrote a book it would be Shhh. Liel laughs. That would be the title.”
“We are changing that now. So we are talking about it, and I’m so grateful that you agreed to come to the podcast. I hope that it was, that you enjoyed our chat together.”
“Yes, we should do it more often. Maybe this is our therapy.”
“I like to respectfully acknowledge the traditional owners of the land on which I’m recording the podcast, the Warranjri people of the Kulin Nation, and pay my respect to their elders past, present and emerging. As we tell our stories, I want to highlight that traditional owners of this land have been storytellers for generations.
Did you know there’s only one more episode for the first season of (Un)marginalised? If you’d like a bonus episode, and a second season, go to my Patreon account now, on www.patreon.com/LielKBridgford or click the link in the show notes. Also, don’t forget to rate, review, share and subscribe to the podcast. Until next time.”
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April 22nd 2021:
(Un)marginalised: S1, E4 with Pascha – Episode transcript
“Shalom everybody. I’m Liel K. Bridgford, and this is (Un)marginalised. Please note the following episode contains conversations about ableism, internalised ablsiem, fatphobia, the holocaust, and eugenics of disabled children, so please take care as you listen. And my guest this week is Pascha, a woman who like me, has Fibular Hemimelia, and that’s how we met. Pascha was born and raised in california, lives in Arizona, and has a career in the banking industry. Thank you for joining me Pascha, and welcome.”
“Thank you for having me, I appreciate it.”
“So to start our chat, can you tell me and our listeners Pascha, which intersections of diversity do you identify as navigating?”
“Well, I would say obviously the disability is something I identify with, and that’s, that’s kind of more of a recent identification for me. I think there was, and we can obviously go deeper into that, but I think that’s something I only acknowledged within let’s say the last five years of so.”
“Yeah right.”
“The good news about that is it’s allowed me to be more of an advocate both you know, socially and even in my workplace for people with disabilities, which is great. And I think another piece of my intersectionality, and and, I think it’s really pertinent considering what happened in the U.S this past week, is um, I’m half jewish, I was raised Jewish. I don’t really practice now, but it is a part of my DNA, a part of my identity. And so, you know, seeing various symbols attached to hate groups and things like that, is also rather jarring and a reminder of that, and a reminder of the not so distant past. So that is really been on my mind a lot recently. My other half is portugese, which is not latino, laughs, but bordering on. Um, that’s kind of it. You know, I would say that I’m you know, I’m still a caucasian woman, and that does afford me privilege in, in society. Um, but, and I’m a straight woman, so that’s an additional privilege I have. I grew up in a very very inclusive family, which I feel very fortunate. Especially in the climate we’re in today, where there does not seem to be a lot of tolerance around, so.”
“Just for context, because when we’re recording it is middle of January, 2021, so everything in the US that’s happened is the attack on the capitol. So just for context, in case, when this is released. Um, I’m curious about the disability, you mentioned that you’ve only started identifying with that in the last sort of five years or so. Can you recognise kind of a thing that happened, an event, or something internally, or was it a process, can you talk to that a little bit?”
“Sure, so I, you know, most of my adult life, I knew that a lot of the problems I had, you know, with anxiety, and depression and things like that, were based on feelings I had um, I had, sort of encountered as a child and sort of let it stew. And I think, something that we’ve talked about in our group. Um, if your listeners don’t know, I created an offshoot of a facebook group for people with fibular hemimelia. And I found that it was mostly parents and there were some, um, there was a lot of looking at everything through rose-colored glasses. And I was afraid that I felt like what we in the U.S. would call a Debbie downer all the time, because my experiences weren’t those of what the parents were expecting for their children. One day somebody from the group private messaged me and said hey, you know I have the same issues you do, um, psychologically. So I started an offshoot group for adults, that are having trouble. Because not every adults have trouble with it. But some of us, it had a really big impact on our lives. And I think being able to correspond with other people who have this deformity, and have experienced some psychological effects because of it, not just the physical, um, really opened my eyes. And one of the things that I know we have discussed on the board is that, there, you know, you were raised with this mentality that it could be worse. Um, that what you have isn’t so bad, it could be worse. You can have cancer, you can have something wrong with your organs. And so that really invalidates your feelings. You don’t want to see yourself as someone who is disabled because that’s not what you’re being told. You’re being told that you’re a normal child with just this one little problem. And so.”
“I had the same word used for me Pascha, I was told I had a leg problemI remember saying that.”
“That’s what we say, exactly.”
“I have a leg problem. What happened to you? Oh I have a problem in my leg, I was born with a problem.” laughs.
“Exactly, I was born with a problem. Yeah, that is definitely a word that I used many many times. And what people didn’t know, and even my family didn’t know until very recently, was that I have been suffering this entire time with just a horrible body image and, and also they didn’t realise how much physical pain I was hiding because they kept saying it could be worse. So, I didn’t want to express myself as being that disadvantaged because, you know there are people who do have it worse. It was really connecting with other people who are having problems with it, that gave me the courage to say yeah I am disabled, I can’t do the same thing as a person with two normality functioning legs can do. Um, you know I have chronic pain because of it, and my body image is just completely shot , and it’s something that I’ve tried to work on accepting. But I can’t change that, and i still struggle with that every day. I’ve been trying , I’m 47 now, and I think when I hit 40 I really started to try and get some semblance of acceptance, just superficially that, ok I’m not going to hide my foot all the time. I was living in Arizona then, and I was tired of covering it up, I wanted to wear flip-flops. You know, I said screw it, I’m not going to hide this anymore. And that’s when I got, I have a tattoo on my foot. It looks like a stamp and it says you know defective, and there’s another stamp that says parts missing, and then on my ankle there’s a received stamp that has my date of birth on it. And I had hesitated to get because I didn’t want to hurt my mother’s feelings. And that was another thing. You know, she, I think, was also was concerned this might have been something she had done. I think the catalyst to being more open about it was meeting other people who like me, who have struggled with it. And the other thing that broke it wide open was, when I was 40, it took me until I was 40 years old to even know that this had a name. I thought I had amniotic banding syndrome. And my parents had always told me that my leg had got caught up in the umbilical cord and cut off the development.”
“Really?”
“Really! And one day I was going to put together a presentation for work and I came across a picture of a baby girl who’s leg looked exactly like mine did at that age. And there was also one of a frog, I will never forget that.” laughs
“Really? I’ve never seen that.”
“And I saw there was a different name attached. And It said Fibular Hemimelia. And I thought what the hell is this. So I googled that and I start looking at it, and every single symptom is exactly what I have. That was just, I remember printing it out, my mother was actually visiting me. I remember reading it to my mother over dinner and saying this is what I have. And I, I was so, I‘m not a very excitable person, and I remember, it was like I was floating on air, like a big weight has been lifted off of me, I could finally attach a name to what I have. Um, but at the same time, it led me down the path of seeking out more and more information, and connecting with the various groups on facebook, and just. It kind of opened up a whole new world for me. And also seeing what types of you know, treatments are available to kids today. But then you kind of hit a brick wall, because when you start exploring what can be done as an adult, sort of everything comes to a screeching halt. Because there is such a emphasis on paediatric orthopaedic care for this. And I’m thrilled, don’t get me wrong, I am so thrilled that the kids today have so many more options. And I’ve seen I would say, every decade of my adult life, I have gone to an orthopedic surgeon, and said you know, what do you think? And I remember in my twenties the guy I went to, I was humiliated. Not only he had no idea what I had, um, was obviously not a specialist in that field, but then he took my x-ray out to sort of like the nurses station area, and brought the other doctors over to look at it, because he has never seen anything like it before.”
“That’s horrible”
“And I thought, well this is a waste of time, you obviously don’t know anything about this. And I think people take their feet for granted until something is wrong with them. They don’t realise how much having a bad foot affects the rest of your body. And so.”
“Absolutely.”
“And so, you know, knowing that you’re stuck with that, for you know, the rest of your life basically. Um, not just the hassle of having to buy two sizes of shoes, and only being able to wear certain styles of shoes. You know it’s also just the pain that comes from it. And um, so you know, it’s sorry I’ve babbled so long I don’t remember the original question. Both laugh. But.”
“That’s all good.” Laugh. “I hear so many people, and I’m the same, you know I’ve only started identifying with being disabled in the last few years, and I haven’t known about the word Fibular Hemimelia until maybe two year ago or three years ago as well. And I think people don’t realise that that can happen, that you grow up just knowing you have a problem, and you mentioned connecting with other people has given you that courage to be an advocate for people with disabilities, and feel more comfortable to hide your leg less perhaps. You know, have you noticed any other differences since you kind of said I am disabled and this is what I might need, or.”
“Not really other than being more vocal about it. I still have a lot of baggage to sort through. So, one thing I will say is that from an early age, I would say, you know, maybe my pre-teens years, like starting what here in the states would be referred to as junior high school or middle school. That coincided with sort of hitting puberty and also my parents getting divorced. And it’s sort of set up a perfect storm if you will.”
“Ok.”
“And I realised that you know, growing up in the 80’s, there was a very, you know in the 70s and 80s, women still wore high heels and panty hose to work and mini skirts were in style. And it was just like, it hit me, i’m never gonna be attractive. I’m never going to be physically attractive. Because I will never leave up to this expectations of how, what’s perceived to be an attractive woman would dress and be able to um, you know express herself sexually, and sexy laundeair, and all that kind of BS that you know, that we’re fed.”
“Yeah.”
“I, I turned inwards and unfortunately I started eating my feelings, literally. And so I started putting on a lot of weight. And to this day it’s something that I struggle with. Because I figured well if no man is going to find me attractive, I may as well keep eating. Because if I keep myself fat, I don’t have to, nobody is going to hit on me, and then I don’t have to reveal that I have this deformity. I was petrified that I would go out with somebody, and you know, even if I was thin. Because I did go through, I finally lost weight, by the time I graduated from high school I was normal, quote unquote, normal size. I should say socially or sociatally acceptable size.” laughs.
“Yeah.”
“And I was petrified, because I was like, if I get hit on, is, and, you know, and things start to get hot and heavy, a you know, it caused a lot of anxiety. And so after high school I started back in with the eating again. You know I was like, no social life, just would sit home and would just gorge until I couldn’t eat anymore. The only thing that would make me feel better was being stuffed and sedated with food. And I blame myself for that, I mean that was my decision. And then to make it worse, people, when my mum you know, was in her heyday, um, she was gorgeous. And I had also been told once I grew up, you know once I became a teenager, oh you look just like your mother. That’s another thing that makes me sad, cause my mum was like 5,7. She’s 76 years old and she still has legs like Tina Turner, I mean they’re just fenomenal dams. So to add insult to injury, I have this mother who people say is beautiful and has these beautiful legs, but I got her face. And I feel like you know, it was wasted on me, because I have the shit body. And I know that’s so fucked up. You know, and it’s part of, this is something, I did go see a therapist tike, to finally start like, I’ve own up to all this. Everything I’m telling you today are things that I have only expressed to people recently. They were things that I didn’t want to acknowledge publicly or even to my closest friends before. But now I don’t care anymore. I think we’ve said that on the board, you know a few of us who are in our mid forties. We’re like, you know we’re in our forties, we just don’t give a shit anymore. You know. Laughs. Everything is out in the open.”
“Which is great.”
“Yeah. I asked the therapist, I said you know, is it considered dysmorphia, body dysmorphia if you have legitimate reasons, you know if you have problems with your body. Because the obesity has also had a great effect on my body. You know I’m covered in stretch marks, I had gastro bypass surgery to lose weight, so I have what they call an anchor now, because I have a huge scar going down my abdomen, plus one that goes across my lower abdomen, you know and then I have scars from my leg surgeries. So I have this tremendous guilt that I feel like I never lived up to this expectation that I would be beautiful like my mother. And that makes me sad too. And I just, I can’t seem to, I don’t know if I’ll ever get to that level of self-acceptance. You know, that’s where I was going with the therapist, was how to get self-acceptance. And, and it was really hard for me because I’m a very. I tend to keep things very factual. And a lot of the writing that I see about self-acceptance is very newagey, like I can’t see myself buying it, would be the best way to put it.”
“Yeah.”
“I can’t relax enough to meditate, you know, I’ve got issues with anxiety. And, and those again caused by feeling anxious about how I look, and how I present myself to the world, and having this food addiction, and I’m proud of myself that I’m acknowledging it now. But at the same time I can’t seem to fix it, and I don’t know that I ever will. So i’ve resigned myself to a, you know, kind of like a life of spinsterhood if you will,” laughs. “So, um,”
“That’s a lot.”
“It is, it’s a lot, and it’s, and I feel like it’s all rooted. And I just like why couldn’t just accept yourself the way you were. Just like say you know what, fuck it, you know, look at my leg look at my foot all you want, you know, I’m a confident sexy lady. I cannot do that. I just, there is a mental block there, and I don’t know if it started with kids teasing me about lift, but I just cannot process that. My head cannot wrap itself around that concept.”
“What I want to say is, how you know, you’ve spent more than forty years living in a body that is, by society, society tells you is abnormal. And I think that’s really important to acknowledge that those ideas about being deformed and about not being attractive enough as a woman, you know, not having the legs that your mum had and. I think those are all things that we are told as people by society every single day. As disabled, especially woman. You know, and so we internalise that, I hope that makes sense”
“No it does,”
“It doesn’t come from nowhere.”
“It does, yeah. And I think things are getting better. There’s certainly a lot more self-expression today, and you know, when I grew up. I mean most people, tattoos were things bikers had, you know. My dad had one, but it was from his fraternity. And he could pull it off cause he’s kind of scary looking,” laughs. “And so.”
Laughs. “And he’s a man.”
“And he’s a man, so, you know, women with tattoos, it was oh you know, those are biker chicks. So I think today, you know, with the advent of acceptance of body modification. Um, things aren’t as bad. One thing that does encourage me from the boards too is, kids go into school now, they are, you know, on the first day of school they’re getting it out of the way. They’re going up and they’re saying hey, my name is blah blah blah, this is my leg, you know, ask me any questions you want about it. That didn’t happen when I was a kid. And I just remember very hurtful comments, and kids staring at me in grocery stores and pointing at my lift and saying mummy what’s wrong with her. And when I would talk about these things with my family they were like flabbergasted, almost to the point of like I was making it up. And I was like you don’t remember it because it wasn’t happening to you.”
“Exactly.”
“And the most hurtful thing I remember was being in I think third grade I wanna say. And a girl in class broke her leg, and so she had cast and crutches and everybody was making a big production about it. And mind you, I had not had any surgeries around the peopleI was in school with. I had like a three inch lift on my shoe. And so the one girl in class, and I obviously will not mention her name, but I still remember her name, her face and everything about her to this very day. Giggles. She said she’s more special than you are. And I was like, as an adult it still infuriates me. Because A, I didn’t want to be special, I didn’t want to be, you know, I didn’t ask for this to happen, you know, it was completely out of my control. You think I like walking around with a block on my shoe? And attracting attention? I was just so, I still carry that with me, because I wasn’t trying to be special, I wanted to fit in, like any other kid.”
“Exactly.”
“And so it made me a very bitter person too. Um where I would turn around and be mean to other kids that were nice to me, just because I was projecting this onto them. One funny thing, I will share one funny anecdote about.”
“Yep”
Giggles. “Well you may not find it funny. When I was a senior in high school um, I was staying with my grandparents for a while, while my mum and I were in between houses. At that time my cousin Kelly, who’s really sweet, um, but she was like five years old at the time, and so would stay with my grandmother after she got out of preschool, or kindergarten. And so here I am, I’m a surly seventeen year old, who just wants to you know, get out of the house and go, you know, smoke weed or whatever with my friends.”
“Yeah”
“And so she, she noticed it one day. My grandfather would always sit in his recliner in the corner of the room, and he was an alcoholic and so he just usually be sitting there, you know, doing nothing,” laughs.
“Ok”
“A couple of scotches deep. And so she said what happened to your foot? And, cause she had noticed my toes were missing. And I said I was bad so grandpa cut them off. And she went screaming to my grandmother, she’s like grandma! If i’m bad is grandpa going to cut my toes off? Both laugh.
“That’s so good.”
“And my grandfather and I were laughing. My grandfather was laughing hysterically. I always apologize to her about it, because she turned out to be the sweetest girl. Laughs. I think that plays into the, you know, making stories about it. Like, sometimes I’ll tell people if they notice it that Dad was in the russian mob and they kidnapped me and they cut of a toe until he paid.”
“Oh wow, that is intense.”
“And, well you know, you just, you gotta have some fun with it.”
“Yeah.”
“I don’t think you can start to accept it until you have a sense of humour about it. Which is why I got those tattoos, which is why I’ll make up ridiculous stories about it. I am encouraged because things have changed, you know, people with differences are not pushed back, I think. I’m very active in the diversability team member network at work because it’s important to me that people with physical differences are represented. When I was a kid, any kind of physical difference was associated with mental differences, you know, learning disabilities. So that was the other thing, was you know having a stigma that there was some sort of learning disability associated with the fact that I had a physical um, difference, and so that part of was hurtful as well, because I knew I wasn’t, I didn’t have that. That’s been my one sort of, you know, for lack of a better term, my kind of fuck you to the world, is, of you know, I had this problem and people associated it with some sort of mental deficiancy. But I’ve been able to create a successful career, you know live independently all of my adulthood,”
“Yeah.”
“And, and really just be a successful person, at least career wise, even though I’m barely holding it together sometimes mentally in my personal life. At least I can say, I’ve excelled in my professional life. And I think it’s also nurtured my sense of humour too. I’m kind of holding back here, but it’s, I do have a very sarcastic sense of humour, and it’s not just self depreciation it’s just in general. I guess, it’s shaped my personality in ways some people might find off putting but other people find humorous. I don’t hold anything back anymore. I still have a lot of issues to work through, but I’m completely open about my disability now. When you see me walking, you don’t know how exhausting it is. Because you don’t know that literally every step I take, I am making sure that I don’t have an obvious limp.”
“Yep, same.”
“But doing that for so many years it’s exhausting.”
“It’s a lot, from my perspective, just really interesting that I’ve also experienced kids telling me that I was the R word, which I won’t repeat. You know, and kind of implying that I had some kind of other disability, a learning disability of some kind. I feel like there’s almost like a need, a need to be extraordinary, or do extraordinary things, in order to kind of be enough, in a way. Because, that’s for me anyway. Like, because I’ve got this problem, quote unquote, of my disability, um, that makes me less than someone else, so I kind of have to in a way exceed every expectation in order to kind of be enough. And that’s something that I’ve internalised, and only recently started realise it was there and started challenging it a little bit. Does that kind of resonate with you?”
“It does a little bit. I think, I was kind of the opposite. I was a bad student. And I do a job that typically you should have a masters degree to do, and I never even finished my bachelors degree. I’m a terrible student. But I get hyper focused on one thing and I just learn the shit out of it. And the resignation comes from feeling like I need to be really good at my job in order to consider myself a success. It really isn’t a positive thing, that so much of my self-esteem, um hinges on my career success. Because I feel that I’m not successful in other parts of my life. Because of this disability. And not getting fulfilment or happiness out of my personal life puts all the weight on fulfilment in my professional life. And so it’s kind of like walking on stilts and just waiting to fall. And it’s unhealthy, but, it is what it is, I mean it’s just where, where I am.”
“Yeah, that’s understandable. And I find it fascinating because I think, because we chatted before about you know, the sense of feeling that you’ll never be as attractive as society tells you you have to be as a woman, to be worthy, and you know as women we are told that the way we look, as females, that is equals to our worth. And then if we don’t reach those standards, which are fatphobic, and ableist and racist as well, and all the rest of it. Then we place that on the career, for sure, that makes total sense.”
“Again, I think it’s an area where strides have been made. I mean I don’t think I wouldn’t have been able to be in the position I’m in um, as a woman, and a lot of what I do is associated with IT, so there’s sort of a stem component to it as well. I feel kind of fortunate that we are in an era where you know, interviews are done by phone now and you don’t need to get yourself gussied up and go into an in-person interview, because I always felt that I’d be rejected right away because I’m fat, you know. And they’re going to equate that with laziness, and they don’t know how good of a job I can do. These expectations of what a successful career woman should look like, giggles, um, those outdated notions.”
“Yeah.”
“But that’s come a long way too, I’ve noticed. That’s another thing I’m kind of on the fence on, because it’s like, part of me is, wants to be accepted for the way I am, but I know internally that it is um, it’s not something I want to be. It’s that I have this dependence. Ok I don’t feel good about myself so I’m gonna eat, ok well I’m going to try and do something about it, but now when go and try and exercise there’s so much that I can’t do because of my legs, that, now I just feel like eating all my feelings again. So there’s so much interconnectedness.”
“You know, there is that kind of sense of everything being kind of insulated, and um, that’s not how we work as humans, everything is so connected. And I think that’s what intersectionality kind of is about. And I guess, with what we’re talking about, I’m curious to hear your thoughts Pascha, what is, what is intersectionality mean to you?”
“You know, I, I acknowledge I still have a lot of privilege as a white woman. I’ll never know what it’s like to live as somebody with balck or brown skin. You know, I only know my own limitations as both a person with a disability that I’m able to hide fairly well, and also as a woman who is ethnically Jewish. And seeing so much hatred come up in this world. And those are the two main pieces of my intersectionality. I’m, I almost feel like I’m not qualified to talk about it.”
“I think it’s really important to acknowledge our privilege in society, and I think what’s interesting is that as someone who navigates intersectionality and diverse identities, I think it does, can make us more aware and have maybe solidarity or empathy.”
“There is a great amount of solidarity there. And last week brought up a good point, um you know, as far as seeing very disturbing imagery as a Jewish person. And and, being an anxious person to begin with, you know, I was texting with a good friend of mine down here, who is you know, very white, and grew up in a very white city. You know, I said oh it’s really terrifying as a jewish person to see that kind of imagery. And she sort of wrote it off like, oh all of our ancestors had problems. I was sort of stung by that. Because I, first of all, those are not my ancestors, those are like my grandparents’ cousins, who were murdered, so I look at it as anybody who I may have potentially met, had they not been killed, um I don’t consider that an ancestor, I consider that family. So that is fresh, and I don’t think a lot of people realise how young we start to learn about those things. Because most Jewish people think about what could happen again, and that we have escape plans, and we have you know, that we think about, how do we pass. Like, my last name is not Jewish, it was changed when my family came here. I don’t like it, but I’m grateful I have it. And I said I can always pass my first name off as Russain, even though it’s aremeich for Pesach. And I told her all this after she said I’m asking you this genuinely, as a Jew do you feel threatened by these things. And I said yeah, even though I don’t practice, I’m still ethnically Jewish and these people want me dead. And so, you know, from what I would say the age of five, I remember seeing pictures of you know piles of bodies and things like that. And so that part of my identity has really come up lately because remembering pictures of them measuring peoples skulls and noses and thinking oh I’m so glad I have a tiny nose. These things go through our minds, this is how we think from a very early age. So when we see somebody, you know, going, storming our capital in an Auschwitz sweatshirt, scares the shit out of me.”
“Yeah, you know, my grandma, cause I grew up in Israel and um, even though I don’t identify as Jewish as such, more as an Israeli, but I’m a Jew-Israeli, if that makes sense to people.”
“No, it’s our ethnicity.”
“Exactly, but you know my grandparents escaped, you know they had to run for their lives, and just lucky that they made it, and a lot of their family were murdered. And you know, my grandmother would talk to me about that regularly from a very early age. And she kept saying we have to remember so that it doesn’t happen again. And we have to make sure it doesn’t happen again. Um, that is terrifying. And I think really important as well, what you were saying about you know, you don’t practice, and I don’t really practice, but in the Holocust, it didn’t matter. laughs. It didn’t matter at all if you didn’t practice”
“It doesn’t’ matter”
“It didn’t make any difference, because if you had a Jewish grandmother you were considered a Jew and the aim was to kill you, and that lives with us, definitely.”
“Yeah, and it’s enabled, and it’s, and we kind of sail through life with it in the back of our minds but not really thinking, oh you know, we’ve made so many strides, this could never happen again. And then we see something like what happened last week, which is a culmination of I think four years of people really coming out of the woodwork, no longer in the shadows. I mean these. I mean we always knew that they existed, and there’s always been, through the years, there’s still been discretion of temples and people having their houses graffitied with swastikas and things like that. So when you’re in the capitol, literally in the capitol building of the country I live in, and you’re wearing you know antisemitic shirts, overtly antisemitic, and some that aren’t so overt. And you were able to get in so easily, I mean that really, is terrifying. and so, you know another thing Liel that I was thinking about too, when we talk about passing and, what would have happened if I had been there. Because deformed kids,”
“Yes!”
“You were either shot on site, like you couldn’t work so you would’ve been shot, or you would be sent to have horrible experiments, medical experiments on you because you, you had a deformity. And so that plays into that too. We’ve kind of come full circle because that, I think oh my god if something like that were to happen again, like I’m deformed, what happens to me. You know, so. That I think adds to the anxiety about it, because i remember them saying you know well disabled kids were just – . It’s a lot to process. And so when I, you know when I tell somebody who’s not Jewish and not disabled, that what happened in this country terrifies me, I don’t think they really are able to grasp. They don’t have the knowledge and the history that we’ve had to learn, what’s like and what our families have gone through and how, you know, just the things that fill our minds, and those images all come rushing back, that we see.”
“This is, like I’m literally feeling teary, because you might be the first person who feels exactly like I feel. And I have felt that since I was a very young kid. It’s incredible. It’s almost, I feel grateful on the one hand, that I was born when I was born, that I am here to tell this story and to, um and to live a good life, but also, just, it makes me enraged. “
“And how both of those pieces of our intersectionality literally intersect, and how things could have been. But we also don’t rest on our laurels about it. You know, we have to stay vigil, and you know, make sure, do our damn best to make sure it doesn’t happen again. My hope is that we have enough allies and that this country has becomes integrated and and, advanced enough now that those of us who are at that kind of disadvantage can sort of all bind together now, and create a very united front, and strong front against the hate. And so that we can you know, not have to think about those things.”
“Exactly”
“But they’re always going to be on our minds”
“Absolutely, and I think it definitely makes you know, every event like this, brings it up. And to try and stay optimistic like I think that’s really hard. Like you have to be actively trying so hard. Laughs. If that makes sense. Like I feel like other people have the ability to be optimistic that everything will be fine. And there’s an Australian saying, she’ll be right, that’s the saying, everything will be fine, that’s what it means. And that kind of really optimistic kind of view, and I just think, it doesn’t’ come naturally to me.” Laughs.
“No, not to me either. And I don’t know, it’s put me at a really anxious state, and I don’t feel that I’m very useful when I’m anxious. And of course all of this is happening during a pandemic, and as you know it’s horrible here. And so the one time I want to be near my family, I can’t be near them. It all just culminates and a lot of anxiety, so.”
“And Pascha, I’m really mindful, um you know, we’ve had, we’re having such a good chat.”
“I know, I’ve been babbling.”
“No, it’s been fantastic, I love it. I’m curious if you have a, you know, if someone was listening to our fantastic chat, who is struggling with navigating intersectionality, whatever it might be for them, what message do you have for them?”
“I would say, do the best you can to accept who you are. Don’t let it manifest. If you have problems with one or more of your identities, and especially if you’re disabled. If you have strong feelings about it, don’t hide them. Be vocal about it, and don’t let it fester, because then you find yourself as a middle-aged woman who feels unworthy and you know, laughs, and feels unattractive, and it didn’t have to be that way. And so, if I could go back in time I would’ve been so much more assertive. Be assertive and be honest. And if people don’t believe you, make them believe you. You know, it’s ok to say that you’re in pain, and it’s ok that you are, you know, yes you acknowledge that it could be worse, but that doesn’t mean it’s any less painful for you. So be upfront with it. Don’t wait until you’re in your late forties to come to terms with it, because you’re gonna feel like you wasted a lot of your life. If you have something holding you back, you know, be honest about it, go to a therapist, talk to somebody about it, reach out. I mean we’re so lucky, the internet is such a double edge sword but at least it allows you to connect with other people who have issues like you do, and so reach out because other people are going through the exact same thing that you are going through. And when you find support and you’re able to talk openly and freely to people about it, it is a tremendous weight off your shoulders.”
“What a great message, I love that Pascha. That’s fascinating. I don’t know about you, but I was always told, when people were teasing me, or you know, or worse, to ignore them”
“Yes”
“And they’ll eventually stop. And I think that. And that’s the message that’s been around for many years, but it’s not actually helpful.”
“It isn’t”
“It’s like, it’s not my responsibility to bear that, it is the schools’ and the family’s, and the community’s responsibility to make sure that these children and these people understand that that’s not ok.”
“And it’s ok to fight back, you know. It’s, it may not seem right, I mean you’re not necessarily, you don’t have to be the bigger person all the time, I guess is what I’m saying. laughs. It’s ok to fight back and show your personality. I really wish I had done that really early on in life. Because I think my life would’ve been different. But maybe this is just the way it was meant to be for me. So, be who you truly are, don’t hide it because of your disability. Just put yourself out there and own it. And have confidence.”
“What a fantastic advice to finish our chat on Pascha, it’s been such a pleasure. I loved our chat, we spoke about so many fascinating things.”
“I know” both laughs. “I apologise if i’m a little chatty, but you know”
“Not, not at all”
“It brings up a lot of stuff. I really appreciate you doing this. And I really appreciate that you asked me to do this.”
“I like to respectfully acknowledge the traditional owners of the land on which I’m recording the podcast, the Warranjri people of the Kulin Nation, and pay my respect to their elders past, present and emerging. As we tell our stories, I want to highlight that traditional owners of this land have been storytellers for generations.
Like this show? To support the ongoing making of this podcast, go to my Patreon account, on www.patreon.com/LielKBridgford. You can also just make a one time donation on my blog. Go to http://lkbridgford.com/support-me and don’t forget to subscribe, rate and review the podcast. Until next time.”
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April 16th 2021:
(Un)marginalised: S1, E3 with Sue – Episode transcript
“Shalom everybody. I’m Liel K. Bridgford, and this is (Un)marginalised. Please note that the following episode contains references to perinatal anxiety and depression, birth trauma, racism and ageism, so please take care as you listen. My guest this week is Sue. Sue is a mother of two children, a former engineer, and she’s from Chennai in South India. So thank you so much Sue for joining me today.”
“Oh that’s my pleasure Liel. It’s a privilege to be on your show.”
“Can you tell me and our listeners which intersection of diversity do you identify with?”
“I, obviously, the first thing that comes to my mind is that of a migrant. Someone who has come to Australia from the subcontinent. And, I carry with me my cultural identity as well. Other than that I, my, the strongest thing that I see myself as is being a mum, and a mum that’s gone through a rough time giving birth to both her kids, a mum with birth trauma. And also a mum with a perinatal depression and anxiety. I’ve had both antenatal and postnatal depression and anxiety. So, and it then comes to my profession. Both laugh. It’s a mixed bag, for me, comes after both these identities. I started off as an engineer. I loved the job, not that I didn’t like it. I worked in a few places,um, and I did well. But after my life experiences I got drawn towards psychology. And I’m trying to become a psychologist.”
“You know, when did you actually realise, that you were, kind of living through these intersections?”
“I mean, being a migrant um, was something that hit my face in the first week of coming to Australia. Because I was harassed racially on my first public transport trip, and I didn’t realise what was going on. Yeah. And that was the first time that I realised that I was different, to the people around me. And then when I became a mum for the first time I had gone through birth trauma, and I needed some explanation from the people who were working there, and I asked them what happened to me, can someone tell me what happened. And there was a lot of, I don’t know how I came across, because the people that spoke to me were very highly placed in the organisation and they kept referring to my race. They probably thought I felt racially alone or something, but i didn’t feel like that.”
“Wow.”
“So that’s when I noticed the intersectionality. Because to others I didn’t look like just a mum who’s just gone through birth trauma, and wanted answers, I looked like a mum from a minority as well. Yeah, and that was a revelation for me. Because I didn’t see myself as those two things put together, I saw them as different aspects of me, but.”
“Wow, that’s really interesting, and kind of confronting. So there’s a lot there that you said. So can i just go back to the experience of, on public transport, can you tell me what happened?”
“Yes, ah, we were looking to move houses, and we were just renting at the time, and I was, my husband was at work, he was in a different suburb, and I had to join him for one of those home inspections. So I took the public transport, I had, I mean, I had been overseas before, I didn’t come directly from India to Australia, I had lived in the UK for a while and I used public transport extensively there. So I thought I knew my way, I was pretty confident. But suddenly there’s something that hit my head. And I kept turning back and there was nobody, and I kept being hit again and again. And then a couple of kids, probably teenagers, probably around 13-15. They just started sniggering, and I didn’t realise what was happening and when they got up they said something about my clothes and the way I looked, and apparently they have been throwing peanuts or something.”
“Wow.”
“And they threw it on my face as well. It was a shock. I don’t know, because when I talked about it with my husband, he said probably the kids need help. They might be troubled kids or something, and so that sort of mellowed down the experience for me. To see it from their perspective as well, not just to feel the victim.”
“Yeah, absolutely, but I think it’s a really big thing and you know, that was the first week or week and a half after you just arrived to Australia, that must have been really shocking. And I think even though we say, we get told that all the time as a minority, or if we get bullied for whatever reason, we get told it’s their fault but just ignore it. And I think on the one hand I think it’s good that we can have that empathy for the other side. But at the same time, it’s not ok. You know, that’s really, a terrible experience for you, and I can’t imagine, that would have left you feeling all sorts of things about being in Australia, and being in public.”
“That is true. And I still worry for my kids, whether they would have to experience something of that sort if they ever use public transport for, by themselves. I mean every time, there was another experience with public transport as well, I was waiting at a bus stop, that was much later. And there was this old man, probably in his seventies or sixties, he just came up to me and just that I should going back on the boat. Um, I didn’t come by boat, I came by a flight, but they group us all in one bunch based on our colour or whatever. And he said that’s safer for me, and he worried for me. And…”
“That’s what he said, he was worried about your wellbeing?”
“Yeah.”
“And that was a random person that you did not know?”
“Yeah just a random person, an elderly person. I usually, I’m a bit soft with people who are older. Because um, my parents live on their own, overseas. And I usually imagine them to represent them in some way, because.”
“Yeah.”
“Yeah, and I’m quite soft with strange people as well. That was a shock to me coming from someone who’s demographic I respect deeply.”
“Well, firstly, how ignorant, and how rude. It’s just unbelievable. And those are the kind of microaggressions that people don’t realise how much um, minority groups experience still in Australia. That’s awful. And it makes it so hard to deal with as well because you think oh this person is really nice, is he being racist or not, like it can be confusing, did you find that?”
“Yes. I didn’t even know if I had to take offence to that.” Laughs.
“Ok.”
“I didn’t even know if I should call it racism. But it was in a certain way, but it wasn’t at the same time. Yeah.”
“Yeah, it’s complicated, it’s very complicated. And sounds like you didn’t really want to say anything at the time. Is that right? Like you didn’t know what to say as well?”
Laughs. “I didn’t say anything, and I didn’t want to say anything. Even though… I don’t think I would say anything. Because I don’t want to come across as someone um,, who is trying to push their views on people from a different generation. It’s very difficult. It happens with my parents as well. You have to pick your battles, it’s what I feel.”
“But it is a burden to carry, absolutely, that you go away and you think, you know, what do people think about me right now, what assumptions are they making about me?”
“Yeah, and you don’t realise that it’s not only from random strangers, it’s even from people from um, in a profession. Because I, whenever I had to deal with a doctor from a certain generation, I’ve had this experience, because, when I took my child to his first pediatric appointment, my husband is a bit darker than me in terms of skin colour, and he just took one look at us and he said – oh your son is really lucky to have you as parents, because he wouldn’t have to worry about skin cancer. Laughs. And that was a joke in his mind. But.”
“Yeah”
“We didn’t know how to react to that. We just, it was very awkward.”
“And it was the first time that you met this professional, as well?”
“Yes, the first time. But he was really nice to us, he was very professional, he’s a good doctor. But this entertained him, and I don’t know how people can find it funny, but they did.”
“Yeah. And that is the thing. People use humour as a way to degrade other people. And that is another one of those microaggressions that are so difficult to handle, because you know, people can then use that as an excuse, so easily, they can just say oh I was just joking, as if that makes it ok. Like, it actually does not make it ok.”
“And sometimes I don’t even realise they’re joking, because it wasn’t a joke to me.”
“Yeah exactly. With a professional, especially a medical professional, there is a power imbalance as it is. You know, as a patient, we’re coming in, and we expect the professional to give us the best advice, to look after our health, or our child’s health especially. And then for them to use, kind of these kind of aggression and racism, is just, it’s really wrong. And it’s puts us, it put you at an even more vulnerable position than you are as a patient in the first place.”
“Yes, that’s true. Because there was one other experience I know I’m going on with a lot of these stories.”
“No.”
“Yeah, you mentioned it’s the power imbalance. There was this time I was really worried about my health and I’ve seen a specialist. And he probably thought I could be anemic. And he was writing me a request for a test, a blood test. And I, I was just quite anxious at that moment, but he said I’m forced to write a blood test for you because of your skin colour. If it was someone with light skin I would just tell them they’re anemic the moment they walked in. And with you I’m not able to find out because your skin colour is hiding it. I mean, I, I know, there are doctors in countries with brown people. And they do diagnose anemia.” both laugh.
“Yeah.”
“Seriously, I was quite anxious at that moment, and this comment was something I thought was wrong because I just thought he was doing it for my good. And he was the professional, and he’s suppose to be a professional, and whatever he says is professional, both laugh, but he wasn’t. Now these days, I find that for every person who thinks like that, you know, that it’s ok to be causally racist, there are people who are extremely cautious of what they’re saying, and I wouldn’t wish that on them as well. It’s ok, I can take a bit of racism if its done in the right sense. But I don’t want it to um, be as a constant reminder of that I’m different and I’m the outsider and I don’t belong.”
“Absolutely”
“That’s something that I’m quite concerned about, and I really think that talking about it is the way, like you said at the start of this podcast, is to just give space for those experiences and voices.”
“And you mentioned before, I’m really curious to hear, about the organisation after the birth, that they said that your race was a part of the picture, when you didn’t feel that it was. Can you tell me about that?”
“It was not, it was unique in the sense that they were trying to make me feel, um, included, probably, because they didn’t want me to feel alienated. But I wasn’t feeling alienated, because they specifically came and shared with me. After I wanted to hear the explanation, it didn’t happen before that. They were very curious about, ah, I mean, my mother was there and they were very curious about my culture, and they even wanted to say that they had lots of other people, minorities, come and um, use their hospital and they give birth there. Becuase that wasn’t the statistic that I was looking for. I was looking for a statistic that said how common is my birth trauma, because I didn’t want to know how common it is for women of a certain race to give birth at that hospital. It wasn’t what I was looking for, but it was a statistic that was offered to me as an explanation of my birth trauma, and I didn’t know where it fit in the picture.”
“So they said basically, because you, because of your culture, cultural background, that was the reason for experiencing birth trauma?”
“Probably that was the reason. They felt that I wanted an explanation and needed an answer because I was feeling like an outsider and I had some racial insecurity, which I did not have, and I still don’t have. Australia has been a great country. Despite these few incidents there has been so many instances where I have felt included. It didn’t strike me at that moment that i was an outsider, and I had to feel a certain way about being an outsider, which I didn’t.” both laugh.
“You had to fit into their template of what it meant to be, you know, someone who isn’t white basically.”
“Yeah people assume things about you if you’re a minority. And one of it is that oh, they come from this group, maybe they’re feeling left out, and maybe they’re feeling um, a little bit um, sad and upset and they want answers. Why, should I address that as well?”
“Yeah.”
“Yeah, but it’s not that case, you know I’m just a person, and probably a user or a client of your services. And you should treat me like any other client.”
“Exactly.”
“And wanting feedback. I’m just wanting feedback from my experience, of my experience, not the experience of people from my cohort.”
“Absolutely. And that assumption, like so many assumptions aren’t’ they? About what you’re meant to feel, and you’re meant to feel exactly like other people from your cultural group are meant to feel, like we are all the same, like you’re all the same. Um, and people make such assumptions about lots of different minority groups. Every person with disability must hate, you know for myself as a disabled person, must hate their lives, you know. Must hate their body. And it’s like no, we have great lives, we love our lives, and I love my body. And you should have got the answers that you were asking for, and not, you know, that’s part of the reason for doing this podcast, is to kind of I guess, make people understand what it’s like to be in your shoes, and shoes of other people. Um, and, I’m wondering, do you think, as professionals, they wanted to support you in that moment and I’m wondering in a professional environment, if someone wanted to raise this issue with a client, do you think there’s a better way or more sensitive way to do that?”
“Maybe at that time just relating to my experience, I would have probably asked, wanted them to ask about how I felt, um supported. Not just assume things. Whether I really identified with that supposed sense of being a minority at that moment. I do identify with that but not at that moment. At that moment I was just a mum. Um, It’s probably good to check with the person before jumping to conclusions. And I know people are trying to be nice, but oftentimes that’s not useful.”
“That’s such great advice, just to listen, and not to make any assumptions, because we know all of us are changing at every moment. I know for me, I know that sometimes I identify as Israeli, and other times I don’t, and also sometimes I identify as a disabled person, other times I don’t think about it. So we really need to avoid making assumptions, because they can be damaging to listening to how someone is actually feeling in the moment. You know, we talked a lot about kind of what it’s been like for you as a woman of a minority, in lots of different contexts. I’m wondering, you know, you mentioned going through mental health issues after your births and while you were pregnant too. So can you tell me what it was like to kind of navigate that in the context of your culture?”
“Yeah. The biggest thing that I can think of is for me, I really didn’t have the vocabulary for what I was going through. In my culture we just associate anything that’s mental with physical symptoms, even the language is like that.”
“Ok, what do you mean?”
“For instance if you’re anxious we just say we have a tummy ache.”
“Ok.” both laughs.
“Because you have butterflies in your stomach. We use the same word to express both the physical issue and the mental problem. So I really didn’t recognise it for a long time, um. When I finally did I didn’t have the vocabulary for it. Because I couldn’t communicate it to the people next to me or even if I had to see someone, professionally I didn’t know how to bring up the topic or even talk about it. Or that it needed the attention that it deserved. That was a big stumbling moment because of my culture and my upbringing. I do see things changing in my culture. I see a lot of my younger relatives talk about metal health much better than I did. But at the same time, there’s a generation gap. I can, I still don’t talk about what I feel with my parents. The irony is I took my dad to see a psychologist when I was going through antenatal PTSD, and he came with me, he had no clue who I was going to see, he sat outside waiting for me to come out.”
“Really? So he went with you to the office or the clinic? And he didn’t know what it was about?”
“No, and he still doesn’t know and it’s very hard. Even if I try to talk to them, they try to normalise it, saying that that relative had it, or this person they knew had it, and they were fine, and it’s nothing, there’s nothing that needs addressing, it’s just a natural transition in life, and different people react differently, you always been a sensitive child. They, they…”
“Oh really?”
“Yeah, things like that, which makes me doubt whether I’m exaggerating. Even now with my friends from my culture, if I try to talk about it, they quickly get traumatised. The moment I… it feels like you’re bringing down the vibe of the moment, or you’re just dampening the spirits of the occasion. But I meet them during some get together or parties, and if we find a quiet corner and we talk about things that are related to our life experiences, and if ever mental health comes up, no one wants to listen. Because it is a taboo topic.”
“Sounds like it was really difficult. Because that normalising can be minimising as well sometimes. Because people say oh, you know, it’s nothing, nothing to worry about. So what if you’re feeling really down, or really anxious, or whatever you’re experiencing is normal, then it doesn’t deserve any support.”
“Yeah, and people assume that there is a sentence that anxiety is connected to responsibility in the indian culture, it’s what I feel. Because if you don’t worry about things, you’re being laid back and lazy, that’s the general context.”
“Oh ok, yeah.” both laugh.
“The worrior is seen as having a sense of responsibility about them. And that was a big learning for me to have, because I had never seen it as something wrong with me. It has always been a positive, on the other hand, being anxious. And people didn’t see it as a weakness, it was seen as a strength”
“That’s so interesting. So it’s actually encouraged in the Indian culture to be anxious.”
“And it was debilitating sometimes, even if it was debilitating, I thought it was something I was doing right.”
“It was still like a success, because you were being worried enough to care. Like worrying equals caring.” both laugh.
“Yeah.”
“Yeah. and I think it’s like that in quite a few cultures, and families. You know, I know that for me, I had that mentality when I became a mum, and one of the first feelings I had for my child when I was pregnant was worry. Both laugh. And I remember one of my colleagues said well that’s the first kind of sign of attachment, you’re worried about your unknown child. But it was really, uncomfortable as well. Like there’s some worry that’s good, but there was some worry that really felt uncomfortable for me as well.”
“Yes. When I let go of that idea it was very difficult for my family to accept that, because they thought, something is wrong with me and I need to pay more attention to my mothering, or whatever that is.”
“Oh.”
“Yeah, even my dad, he, I remember the first time I left my kids with him to go to the gym, he literally harassed me. Laughs. He kept calling me every minute saying the baby’s crying, both laughing. where’s your responsibility, your mum never left you when you were this young. I thought that I was doing something wrong just by leaving my kids with someone for a few minutes with someone else.”
“That sounds like a lot of pressure.”
“Yeah, it was hard for them to understand that concept of self-care, although they practiced it in subtle ways themselves, because everybody is human.”
“Yeah, of course.” both laugh.
“But they don’t like that to be done explicitly.”
“Does it feel like there’s um, shame almost? Like looking after yourself is kind of shameful in a way?”
“It’s shameful, and it’s also, um, it’s mainly, I think, here I should say that I identify myself as a woman, because my culture is very patriarchal. And it’s alright for men to engage in self care, but the woman needs to, self-care is a big leap for a woman, whereas for men it’s just something they do.”
“And you know, patriarchy is still alive and kicking, I think in our culture too, here in Australia, but sounds like there’s quite a significant gap in the culture you come from, men have these privileges of being allowed to and even celebrated, to engage in self-care, and for women it’s absolutely shameful.”
“Yeah, but things are changing, and I’m glad about that. That people are pushing back.”
“Talking about these things, it’s so important. You know, you mentioned that you managed to let go of those expectations, of having to be anxious and not looking after yourself. How do you think you managed to do it?”
“I think, the first time I did that, I don’t know. Probably because, it came organically. I had to do it.”
“Ok, necessity.” both laugh.
“And I did little things, I didn’t take big steps, I did very small things.And initially it was hard for my husband to even relate to it. Because he also thought being a parent meant you had to be there all the time. But then I encouraged him to take care of himself. We started supporting each other, it felt nice. Moment it starts to feel nice, you’re more encouraged to engage in it more. Because it felt like this is what I was looking for all this time. That lightbulb moment.”
“Yeah, I matter.” both laughing.
“I matter, yes, I do.” both laugh. “And I’m a person and I exist here as me. It’s just that we come from a collective culture. We’re so enmeshed into this family, and sometimes wider society as well. And we tend to lose a sense of who we are. And then we got little snippets of time just to do that.”
“Yeah”
“It feels like, what a big relief.”
“That’s incredible. And so interesting you know the collective versus individualistic cultures. You know, I think the Israeli culture, when you rate it, it’s somewhere in the middle, so we have kind of both. I think the Australian rates very highly on the individualistic. But sounds like the Indian culture is more the collective. And that is a big gap, isn’t it?”
“But I love that aspect about Australian culture. Because I’m an only child and I really love being an only child, and I like the way Australians look after themselves and even I see a lot of old people being so independent, they just don’t want to be, be dependant on someone for anything, and nothing really gets them down, that’s what I feel, because when see people of a similar generation in India they feel old very early. They’re used to being taken care of by their children and looked after, they just don’t realise that they can do much more with their life. They sort of retire as soon as they are professionally made to retire. It’s just, they retire from life. Both laugh. I don’t see that in Australia at all, and it’s been so refreshing and inspiring for both me and my husband, because…whereas in India the moment you cross 30 you’re made to feel old.”
“Really? At 30?”
“Yeah, I see many friends in 30 who feel like, they’re actually called words like aunt, sister, or elder sister by strangers, because we have that practice of, it’s a form of, to refer to strangers as brother and sister and, just like we say bro, it’s something like that. Both laugh. So when you reach that stage and you hit 30, you’re referred to as an aunt. When I go back to India I’m called an aunt and it’s like, what, I don’t feel like that. And even when you go to a beautician, they give you recommended products meant for mature skin.”
“Really?” both laughing.
“There’s no way I’m having this. I mean I’m much older than 30 now, but it started happening when I was 30. And it’s.”
“That’s incredible”
“And that’s amazing about Australia, because I think it’s a country where people stay forever young.” both laugh.
“I love that idea, forever young in Australia.”
“Despite the sun I guess.” both laugh
“With a lot of sunscreen and a hat.”
“Yes.”
“We talked a lot about the external stigmas in your culture and Australia, and all of that. Do you feel that you’ve dealt with internalised stigma as well?”
“Yes, I refused to seek professional help. Although my husband was all for it. I refused to seek it, thinking that it would be a long-lasting stigma for me and my children and when they grow up and they have issues they’ll probably think that their mum gave it to them and things like that. So that stopped me from actually, although I knew I needed some support. It stopped me from getting it or taking it, so that was my first step. And then, I had to, it was a big deal because it’s ok for people in my culture to give their children diabetes or heart disease, but it’s not ok to give mental illness.” both laugh.
“Ok.”
“But it’s perfectly fine, people just talk about my dad has diabetes, I have three generations of diabetes running in my family. Both laughing. It’s absolutely fine, but it’s not fine for anything else, to do with mental health.”
“Wow, that stigma, the taboo that you talked about.”
“Yes, and it’s, it was more than me, I was worried about my kids and what it means for them. Because my, as I said, my biggest identity as a mum. Once I became a mum, it was the biggest thing in my life, because of what I went through. And also my culture just makes it a big deal, because the mothers, we are all-sacrificing, goddess or whatever, laugh, the perfect being, or whatever. And I just, don’t like that idea. Or even of mother’s day, it just glorifies the mothers so much. Mostly just wanting to accept that and even talk about it with my children. I have significant trouble, I had significant trouble talking about it, about what I went through with my kids. When they see pictures of themselves in the early days, my son is not very clued on all this, but my daughter she is, she says why don’t you smile, why don’t you look happy in those pictures?”
“Really?”
“Yeah, and I don’t feel like I have to lie to her. Earlier I used to just avoid those questions. But now as she becomes older I just tell her that I was not well at the time and I became better. And then whatever was going on with me, a bit sad, or just explain my experience in a language that she would understand. Because I felt that I was being dishonest with my child about a very important question that’s very relevant to her. And it’s important that she knows what her mum went through. And that’s it’s ok for her to feel that way as well. It’s, I just wanted to send that message across.”
“Yeah. It’s so interesting what you said about, you know the glorifying of motherhood, and even what you said about mother’s day. Mothers having to be sacrificing everything to be a good mother. And it’s so much pressure. Because it’s not just that we get the credit, but you also get all the responsibility with that. You know, that you are responsible for every thing. And like you said, you’re expected to be there all of the time. And that is unrealistic for most people, and unhealthy.”
“Yeah, and it’s mothers day where mothers are taken care of and allowed time for themselves just for one day, it’s not fair.”
“One day in the year!” both laugh. “That is not enough. For anyone who is listening to this. It is not enough! And it’s so incredible that you’ve been able to talk to your daughter about it now, and I think that what you’re doing, is you’re breaking that taboo Sue.”
“Yeah, we are all allowed to have a cold, we’re allowed to have a sneeze, but we’re not allowed to feel depressed or anxious.”
“Yep.”
“I just don’t want my children to grow in an environment like that. Because I want them to know it’s ok to feel not ok.”
“Um, and I guess I’m curious, what do you find most interesting or exciting about navigating all those identities, and your life, I guess?”
“I feel that, all of us wear different hats, and sometimes what I find interesting is when I’m allowed to wear more than one. And I can take off one if I want, and I can put one on if I want, but, I don’t know if others see me, see my hats disappear or appear again, but for me they do, they are there, and they are not there. Coming back to your question, um, I don’t think I really realised that I was actually navigating these different identities until you mentioned it.”
“Yep.” both laugh. “The power of reflection, hey?”
“Yes, Yes. But coming to think of it, ah, I don’t think that’s been smooth. It’s been messy but it’s been wonderful at the same time.”
“Yeah.”
“It just defines me as a, as who I am uniquely. I’m proud of every badge that I wear, even ones that are not great. Because without those I wouldn’t be who I am. And I wouldn’t have the qualities that I have now. And I’m very thankful for those experiences. I didn’t, I don’t see myself reaching here if iI haven’t taken that path. I’m really proud to be here, right now, in this moment.”
“That’s incredible. What a great response. Um I’m wondering, you know cause we’re talking about the different hats, and taking them off and on. And you know, some people who identify with multiple minority groups feel that they don’t kind of fully belong in any of those groups. So for instance in her book The Pretty One, Keah Brown writes about feeling that she doesn’t fully belong to the black community, nor the disability community. Um, do you identify with that experience at all?”
“Yes I do, um, but what I would say is wherever I find myself belonging, it’s just for a certain part of me that belongs there. And I really treasure that sense of belonging. Whereas the other part of me that doesn’t fit there, it’s still deprived, but what I cherish here, I just want to cherish it fully, and then feed the other part later on wherever it feels belongs. Both laugh. Yes, but I do feel that, because I don’t feel like I fit anywhere 100%, and it makes it interesting, because I don’t want to be blanketed with one hue, I like to be someone with different shades, it makes me more complex, and more serious I guess.” both laugh.
“Absolutely, so much to you Sue. I know I have that experience too, you know. Like if I meet Israelis now I’m like oh yeah, I feel a kind of sense of belonging. But some parts of me don’t feel like that, because i feel like very much a melbournian now, and kind of Australian too, so that doesn’t fit. And, um, disability is quite a taboo culture still, like, not really talked about, so then I can’t really talk about that part of myself. So yeah, you need to also for yourself, find ways of nourishing all these different parts of yourself.”
“Yeah, but sometimes, like I mentioned, it’s hard, you really have a strong feeling when belonging somewhere, to want to open up, and speak about the whole of you, you want, you really want that sense of being there 100%, but it’s not possible. You just have to remind yourself that this is not the time or space for that. You got to keep the child inside you quiet. That wants to be part of the group. But it’s not, it’s just a learning. It’s just a part of being a complex adult. We’re all complex beings, we’re not simple.”
“You know but sometimes, um, maybe you need to underplay or hide parts of yourself. Is that right? That’s kind of what I’m hearing.”
“Yes. You’re very right, Liel. I recently had an experience as well, because where I had to, be, a discussion of a few people talking about their birth experience. And I had to just pick the parts which will not traumatise others. Probably my way of caring for them. But I have to, even the parts that were very traumatic to me, I had to um, use a different language, I had to make it funny.”
“Oh really?”
“Yeah. On one way it was healing for me, because I learned to look at my experience from a different perspective. But it’s not that the, it’s not, it is hard, just trying to be totally honest. You’ve got to be very tactful in places like that. Because, merely for the fear that you don’t want to lose that sense of belonging, that you already have. You don’t want to ruin something good by bringing something new.”
“Yeah, absolutely. And there is, that’s so interesting that there is a fear. That you know, if you fit into this group, at least part of you fits in and feels included, then you don’t want to feel completely excluded. So maybe that is a reason sometimes for hiding parts of us, or who you are. And you know, it is, it’s a real fear. It’s based in reality. I think it’s important for people to understand that it’s based on your experiences of getting, you know, food thrown at you in the bus, and people down playing your mental health. And so of course you’d be worried about feeling excluded and um, being alienated as well.”
“That’s true. Yeah. I find it strange sometimes when, I find it actually, undeveloped, for myself. Because whenever I’m in other settings and people refer to my background, even in a positive way, I don’t know how far of my background that I can share. And what is, I always think about the audience. It’s not free for me, I don’t want to share freely. But see what is acceptable for this group. And is it ok for me to talk about this here. It’s just that, the background process that goes in my mind. It’s the constant editing that happens.”
“Yeah.” both laugh.
“You think of saying something, and you proofread it in your mind, and then, and then you edit it, then change it to something else.”
“Yeah, I love that. It’s so important. I think it happens for so many of us. But it is also exhausting, you know?”
“Yes, it is, it is.”
“Because sometimes you just want to have a chat, and relax, and whatever, and that’s a lot of work to go into, just what do I share here?”
“But in certain conversations where identities clash, that’s where I feel like I have, I should have done better, I should have done this. In others, it’s usually in places where you have people from different parts of your identity there, where you relate to both of them, although in different ways. But you got to engage with both. That’s, that’s very challenging position for me.”
“There’s edits ready for, you know the mum friends, and edits ready for the Indian friends, and edits ready for the…both laugh. Um, then all of a sudden, they come together, and what do you do with that? “
“Yeah, it’s hard, it’s hard, but it’s interesting, I mean. Intersectionality as you, I have not heard of the term until you talked about it. but,”
“Really?”
“No I haven’t.” Both laugh. “But it makes so much sense to me now, and I feel like I was being pulled in different directions. Now I know that I’m one piece. Just with that word, that defines what I was going through.”
“Interesting, cause I was actually going to ask, and maybe that’s a part of the answer, but maybe you have more to add, what does intersectionality mean to you?”
Both Laugh. “It didn’t even exist in my vocabulary until now, but now I really love the word, because it explains to me a lot of things that I was going through. And it’s, intersectionality to me means that I’m not pulled in all directions, but I am a part of both. It’s like I have a feet in the bedroom and a feet in my study, and I have, I am in my house, it’s my house, it’s just different rooms in my house. It’s not that I am um, I am, being dragged here and made to let go of the other, intersectionality it’s something that allows me to be part of both. It has its challenges no doubt, but it also has its benefits”
“I’m curious, you know, when we’re recording this it’s December 2020. It’s been a very tough year for so many of us, with Covid, with lockdowns, with border closures, and more. So, did it have do you think, particular challenges or highlights for you this year?”
“Yes. This year, was a bit too much. Because we lost a family member and we had to do a virtual funeral, and that didn’t even feel like we were a part of the family. And um, because of the restrictions we couldn’t go. Even now, even after the lockdown has been lifted, I feel like our lives are not the same,and it’s never going to be the same. Merely for the fact that we have gone through this. And not being able to, I usually visit my family once a year. And not being able to go there, feels strange, and usually go there for Christmas. And feels sad that we can’t go, and.”
“Of course.”
“Yeah, it’s a strange time, it’s a strange time to, I mean I, there’s been births in the family, death in the family. It’s a strange time to be living. It’s not a strange time just to experience a certain experience. It’s just a strange time to be.”
“Absolutely. And completely agree with you. You know, life is never going to be the same, and that’s positive and negative too. And um, it leads me to my next question, because I really relate to the idea that we’re going to build our society, not from scratch, but we have an opportunity after Covid to change, um because things are starting again almost. So what do you think needs to change in our society, to make your life, and the lives of others who are navigating intersectionality, better?”
“I think that ah, assumptions, and what people assume about you or your identity, that needs to, come down. Because, as humans, it’s our tendency to simplify things and put things in boxes. So that we don’t have to spend too much time thinking. And we do that about people as well. Yeah, I think that needs to reduce. Because that’s what is the problem. Because it’s not hard for our children. Schools especially, I think, it’s the starting point, and I think we are doing a good job these days, where things about identity and intersectionality need to be introduced, because kids also simplify things, it’s’ not just the older generation, they also tend to simplify things.”
“Of course”
“But it’s the people, like us, who are in the middle of the age line, that hold big responsibility, in shaping.”
“Exactly”
“I think schools are a big starting point for our society to think of even making a change.”
“Absolutely, well said Sue. Thank you, that’s really good, really good points. You mentioned a few things that you’re proud of Sue, but I’m wondering if there was anything that you wanted to share, some things that you’re most proud of?”
“The thing that I’m most proud of, is being here, being here, I mean all of us should be proud of it. Because we’ve gone through two waves, and we’ve gone out of it. I mean Covid has given us so much to be proud of. It’s just living through this year makes us part of history. And it’s a privilege just to go through this. I mean we deserve a place in history as well for being a part of a population that went through a significant global trauma.”
“Absolutely.”
“And we’re pulling, we’re just showing the strength of humanity. And we’re showing the good, bad and ugly. There’s places things have been bad,”
“Yes.” both laugh.
“They have, big time. And we’re also seeing places, with very incredible stories, I mean stories that are emerging. And i’m very proud, I mean, despite what my individual experience might be, I’m really proud of being part of this collective.”
“My very last question for you Sue. If there’s anyone listening today to this who is struggling to navigate intersectionality, what message do you have for them?”
“Well just be proud of wearing all your hats, and be, and feel free to take them off and put them on anytime you want. Never give up that freedom, to wear them and take them off as you feel, it’s very easy to feel tired, and give up that freedom. But it’s something that’s very precious and not, worth fighting for.”
“Um, what an incredible chat we’ve had Sue. Wow. I am overwhelmed by how much you’ve shared, and how many different topics we’ve touched on!”
“Yes.”
“In one chat, it’s amazing.”
“I’ve learned a lot about myself thanks to you.”
“Oh, laughs, that’s good.”
“Ah, well, it’s been a great honour to be featured on your podcast. And I really really enjoyed this time, and I hope your podcast becomes a big success and you get a lot of, a lot of interesting people and voices that, you get to feature in your show. And the human experiences are so complex and unique, and I am, really really impressed by the effort that you’ve taken to give space for those voices, because,”
“Thank you Sue.”
“We all get boxed into numbers and statistics and categories, but giving, untangling all that, and just, giving, serving that in a wonderful buffet of human experiences is what you’re doing, and I like, really appreciate the effort.”
“It’s been such a pleasure. Thank you.
I like to respectfully acknowledge the traditional owners of the land on which I’m recording the podcast, the Warranjri people of the Kulin Nation, and pay my respect to their elders past, present and emerging. As we tell our stories, I want to highlight that traditional owners of this land have been storytellers for generations.
Like this show? To support the ongoing making of this podcast, go to my Patreon account, on www.patreon.com/LielKBridgford. You can also just make a one time donation on my blog. Go to http://lkbridgford.com/support-me and don’t forget to subscribe, rate and review the podcast. Until next time.”
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April 9th 2021:
Pilot Episode Transcript
“Shalom everybody. I’m Liel K. Bridgford, and this is (Un)marginalised, a raw podcast exploring the hidden truth about living on the intersections of diversity. In this pilot episode, I’ll explain why I’ve started this podcast in the first place, and what I mean by intersectionality. Most episodes to come will feature interviews with real people who navigate intersectionality, in all its glory. And well, non-so-flashy bits too.
A little about me, in case you’re not familiar with my work – I’m a writer, poet, parent, and a proud disabled female. I also hold an honours degree in psychology, and have been in the health and community field for nearly a decade. I have lived with a disability my whole life and have always grappled with issues of identity and culture. I was born in Israel, raised as Jewish and immigrated to Australia in my early 20’s. My relationship with womanhood and femininity is a bit of a complex one, so we’ll get into that another time. For me, navigating my diverse identities can be complicated, but also amazingly rich.
So what is intersectionality? I’ll start with some examples – as a female, I find myself worried about my safety (like many others do). But statistically, I’m more likely to experience gender-based violence because of my disability. Also, I might not be able to run or fight someone off as an able-bodied female might be able to, and that’s scary. When I became a mother, most health professionals’ advice I received was inaccessible – like ‘go for a walk’, which actually exacerbated my physical pain. Most books and apps also didn’t take into account I didn’t have any family around, or ordinary functioning legs.
I find great strengths and wisdom in others’ work – in disability advocacy as well as feminism. There are too many people to name that have made me feel I’m allowed to ask for accessible spaces, or that my experiences of being discriminated against matter. Working in the health and community field, and my engagement with activism has made it gradually clear that we have little understanding of how mental health, physical health, immigration status, race, gender, sexuality, and religion all interact with each other. For instance, we know women are more likely to struggle with their mental health during the perinatal period, but what about disabled women, or disabled women of colour? The understanding, knowledge, and data on such complex interactions of diverse identities is still under talked about, under researched, and misunderstood. That is what I mean by intersectionality – the experience of belonging to multiple disadvantaged groups.
All of us have multiple identities or roles – you are probably a child, friend, colleague, partner, parent, and many more. Sometimes you’re a customer, other times you’re the professional. Those of us who belong to multiple groups who have been traditionally marginalised experience particular challenges, but also hold unique insights, empathy or creativity.
When I started reading and connecting with others who also navigate intersectionality, I realised I wasn’t alone. It also brought forward the idea of this podcast – to facilitate everybody’s understanding of diverse experiences, and promote a conversation. I want to make feminism AND disability activism accessible and relevant to all. This podcast is being released in 2021, which I consider ‘The Year Of Rebuilding’. After the devastating effects of last year, we have an opportunity to rebuild our society for the better. Now, more than ever, it is critical for us to think of what new world we want to create once this is all over. Those of us who identify with multiple minority groups are at greater risk of gender-based violence, exlcusion, discrimination, imprismonment and death.
Our understanding as a society, and as professionals, must be complex, to fit the complex, rich and diverse society we live in. For me, this is the beauty of our culture, and humanity. Our richness and intricacies should be celebrated, not hidden or skimmed over.
So I’ve decided to try and give a voice to the traditionally marginalised, through this podcast, (Un)marginalised. Through the episodes I will be interviewing real people who navigate intersectionality, to hear what it’s been like for them. I want to give a voice to people who have historically been invisible in culture, arts, politics and more.
This podcast is for everyone. It is for you, who navigates multiple disadvantaged groups. It is also for you, who identifies with none, but wants to make this world equal and safe for all people.
You’ll hear about the triumphs, resilience, and struggles. I guarantee you will laugh, possibly cry, but most certainly gain a new and deeper understanding of others’ experience. I’m going to learn too, no doubt, because through listening to others and hearing each others’ stories, we grow to become the wonderful collective I know we can be.
So put your headphones in, and let’s get started.
I like to respectfully acknowledge the traditional owners of the land on which I’m recording the podcast, the Warranjri people of the Kulin Nation, and pay my respect to their elders past, present and emerging. As we tell our stories, I want to highlight that traditional owners of this land have been story tellers for generations.
To support the ongoing making of this podcast, head over to my patreon account www.patreon.com/LielKBridgford.”
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(Un)marginalised: S1, E2 with Emily McIntyre – Episode transcript
*Please note – each new line represents speech from a separate person. Italics is used to describe reactions.
*Please also note I have transcribed the episodes myself which have taken much time and energy. I’m aware the transcript isn’t perfect but I hope it’s readable and easy enough to understand. If you have feedback on how to make the format more accessible please feel free to let me know – through the contact me page of the site.
~
“Shalom everybody. I’m Liel K. Bridgford, and this is (Un)marginalised. Just note that the following episode contains references to ableism and discrimnitation, so please take care as you listen. My guest this week is Emily. Emily is a woman who lives on Eora nation, she’s a writer and an advocate. She likes books, and is passionate about a continuous self-exploration as a way of understanding ourselves and each other. Thank you for joining me Emily.”
“Hi, it’s good to be here.”
“You too, I’m so glad we can finally do this.”
“I know, it’s been a while in the making, but I’m so glad we can sit down and record this. I’m really excited to see what we’re going to chat about.”
“Why don’t we start with, if you can tell us – me and our listeners – what kind of identities do you identify as navigating, in terms of intersectionality?”
“It’s a really good question. I’ve been thinking about it a lot lately, I guess I identify as being a woman. I do identify as being disabled, and chronically ill, and I guess how that is represented in my life is very different and from what people looking inwards see. Um, yeah, I guess those are the kind of main intersections, but the more I learn about different identities, the more I go ‘oh, I didn’t realise that I could possibly be at this intersection as well’. So it’s really interesting to learn more about.”
“Nice. When did you first realise you were navigating intersectionality?”
“Um, I guess maybe around 17, I was actually diagnosed with clinical depression, so I guess I do identify with the mental health, or mental illness intersection as well. And I remember the first time trying to navigate school to get an extension, and teachers not actually understanding what it meant or the consequences of being depressed actually looked like. And I was at a selective school. And, a selective school in New South Wales is an academically selective school. So in year 6 you sit a academic selective school test, so it’s, I can’t remember exactly what it is, but it’s basically a test on English, Maths and problem solving I think. And the top people from those tests then can get offered a place in selective schools. So, it was that realisation that people don’t necessarily understand their experiences, and the teachers didn’t understand that you could be at a selective school, and have mental health issues, laughs, or you could be at a selective school, and maybe need to take two years to do your HSC. And I guess that was kind of a pivoting moment for me, because I had to then advocate for myself, but I didn’t necessarily have the language to do that at 17. And then when I moved on to uni, I had that language, but then when I developed all my chronically ill things, i realised that how I would advocate for myself would change again, because a lot of people didn’t understand mental illness, but then they didn’t understand chronically ill, and it was almost easier to use the mental illness, laughs, to advocate for myself.”
“Right”
“I guess it was in those moments that I realised that I could be a student, and be a woman, and have mental issues, and be chronically ill, and I was also diagnosed with inattentive ADHD when I was 19, and that reframed everything. And I don’t’ normally talk about diagnoses in detail, but it was just realising that we, I guess myself and disabled people, or people with disabilities in general, aren’t just this static thing, we’re not tick boxes.
“Yeah.”
“And when I finally realised that I kind of identified as being disabeld, and that it wasn’t a dirty word, I realised that I brought along my chronic illness experience and identity, and my mental health I guess identity, relearning everything with ADHD. And it was like oh, there isn’t a group for me. Like, I don’t necessarily fit in one box, and it’s really hard to find people to meet you at that intersection, and to actually acknowledge that we’re not just one thing, um.”
“Yeah.”
“And i guess that’s why I love chatting to you, because you get that, but a lot of people um, they go ‘oh, so you’ve had history of depression, but you’re also disabled, but you’re working, but you’re female, but, you have ADHD, you can’t,’ like, people can’t just get there.”
“It doesn’t work together, we don’t know what to do with this.”
“I know, and I have um, I found treatments, or not treatments, more like management strategies that work for me, and they’re really outside the box of what people expect. So if I explain it, people go ‘what? You have to go into hospital once a year for two or three weeks?’ ‘I’m like yeah, that gives me quality of life.’ ‘But you have to go into hospital, I can’t believe it. You have to use a mobility aid sometimes but not all the time?’ like it’s just mind blowing for them. That’s when I realised I guess that people don’t see life experiences or people as complex beings. They just, mostly see people as how we want to see them. And if someone sees you as a student, then you’re a student. But anything outside that box, is just um, seems, um, comprehensible to people.”
“Yeah, absolutely. We use stereotypes way too much. So when we do identify with multiple I guess disadvantaged groups, that becomes complicated. And people either don’t know what to do with it, they’re scared of it. And obviously using stereotypes sometimes doesn’t work because they’re used to thinking of someone with a disability or with mental illness a particular way. And all of a sudden you’re there and they’re like ‘oh, but you don’t look like someone that I imagined to have a mental illness, or you don’t look like someone who is chronically ill, or this is not what I was taught at university that you’re meant to be using for your treatments. And I’m wondering, you know, I’m really fascinated by the advocating side of things, how that changed for you over time. And I know that, and you mentioned, you realised disability wasn’t a dirty word, because I know that for me, definitely in Israel definitely disability is still a dirty word, so, just practicing it helps destigmatize. But it still is a dirty word in a lot of places. And I’m wondering how, because obviously we’re talking now about your disability, and about a range of kind of diverse identities openly, and you’ve been doing that for a little while. But it wasn’t always the case, was it?”
“No, um. I guess it’s hard to come to the realisation. Because, um, I’m trying to think of where to start. I’ll give you an example. When, or, when I started becoming chronically ill, and had to go through a lot of doctors, it was like something was wrong with me. And I needed to find a cure or get a diagnosis to find out, and not knowing that, and going through years of tests, and different treatments and things like that. You just, it’s like, you feel like you need to be fixed, or there’s something wrong with you. And you don’t get very, like you’re not encouraged to find identity out of it. It’s like you don’t know what’s wrong with you, so therefore you have to keep trying, and then that will be you.”
“Yeah.”
“So, um, for a while it was like I just wanted to be normal, whatever that is, and I think knowing what normal, whatever that is, looked like. Um, knowing that I’ve had um more energy, more time, and more skills and more capacity. Then to lose that it’s like, I don’t’ want to identify with being disabled or chronically ill, I don’t want to say that I’m no normal. “
“Yeah.”
Sorry I kind of lost the question. But then it got to the point, this is a huge part of my life, and sometimes it’s all of my life. Like why can’t that be a part of me? And I wasn’t, probably about 7 years ago, I wasn’t ready to feel proud of that, but I realised yes I talked about being depressed, and i spoke about having ADHD, so why can’t I then identify with this, and use it to be myself, whatever that is.”
“Yeah.”
“But it’s a really weird journey because some days, like today I’m really happy to chat about it, but then other days I’m like I just want to get on with life. So I don’t think it’s like a static thing.”
“No.”
“I think we always change and feel differently on different moments.”
“Absolutely, I agree with that. And definitely what you’re talking about is something that I felt when I was growing up. I went through treatments, and quote unquote, because those treatments’ goal was to make me as normal, quote unquote, as possible. You know, to make my leg straight, and the same length as the other leg, and all that. And I definitely felt like something needed to be fixed. And that sort of the language that was used as well by medical professionals, so it’s almost impossible not to internalise that, I think. And that is a big journey, that you have gone through. And I’ve gone through a similar, different but similar journey, of going ‘actually maybe I don’t need to be fixed as such, maybe I am ok as I am, and maybe I can embrace that part of myself’. And that’s really interesting. Was there anything particular that you remember, like a moment when you felt like oh I can be proud, or a particular thing that happened, or something you saw, or anything?”
“I think there were, I’ve been thinking about this a lot lately, and I think it was really a collection of small moments. I don’t think there was a huge moment, where I was like ‘oh I’m proud.’ It was more I guess being connected to the online disability community, and finding people like Carly Findlay, Nina Tame, yourself, there’s plenty more that I can’t think of right now. But being able to see people identifying as disabled, or chronically ill, and have community and connection and actually just live their lives, it was really a light bulb moment for me, and realising, it’s like oh I can love to read books, and I can still be disabled. I don’t just have to be like ‘hi I’m Emily here’s all my medical diagnoses, and please accept me or love me.” Both laugh. “It was kind of like, just in case here’s a disclaimer. Now I can be like ‘hi I’m Emily, I love books, I’ve been on a podcast, I have a cat, I love to write.”
“Exactly.”
“Um, you know, I feel like I don’t need to give my medical history to be validated or for someone to understand me. And I think that was just a collection of moments from being connected to a community, and I guess realising my own internalised ableism, and just learning and relearning things. Um, we’ll probably talk about this later. But when I first was like ‘oh, I’m chronically ill,’ was when I was first diagnosed with fibromyalgia, which is a, um, it’s an umbrella diagnosis with lots of different symptoms, which is mostly characterised by basically heightened nervous system. So I joined a lot of fibromyalgia facebook groups, and started using that on hashtags. But what I found that some of that community, that was it. Um, it was like I’ve been diagnosed with this. And people were trying to one-up people. So if I posted ‘Hey i’ve got this new symptom, I’m actually getting a lot of pain in my shoulder, um, has anyone experienced this before?’ someone would be like ‘well I get pain in two of my shoulders, like all the time.’ and then someone would be like ‘I get pain in both my shoulders and my back, and I’ve had it for twenty years and nothing helped. Everyone would trauma dump and like, try and out-symptom each other. It just got to the point where it was so toxic, that I just had to leave a lot of those groups. And then when I was like ‘ok, why don’t I like this? How can I feel pride in myself and be chronically ill? And that’s when I found other people to connect with and follow, and people actually, um, you know, acknowledging, yeah this is crap, we have these symptoms, but we can still be creative, we can still have hobbies, we can still have a life. And I don’t mean that in an ableist way as in to be productive, but more that, you know, I can have these diagnoses, have these symptoms, and it’s crap sometimes, but I can also find joy in little things. I guess that was a big moment when I realised like how do I want to be, and what I guess do I want to feed myself. And I want to connect with people with similar things, just to see how people live their lives, but I don’t want to be in that negative feedback, in that loop.”
“Absolutely, because that’s retraumatising isn’t it? Just a constant negative conversation. And that’s definitely not what disability community is about, as we know. It’s about much much more than that, and I’m so glad you found that. And this is interesting that you talk about it, because this is one of the things I was curious about, to talk to you about, you do identify as a disabled person, but also as having chronic illness, and can you talk about the difference between the two? Do you feel that they’re competing against each other sometimes, or are they, is there overlaps? How do you explain the two things?”
“A great question. So I will say that it’s a very individual perspective. Some people who are chronically ill or have an invisible illness will just say that’s it, and they don’t identify as being disabled. Other people will say no, I’m disabled, I’m not chronically ill. And I’m kind of in the middle.”
“Ok”
“Because I started off in the chronic ill community, and I’m still in there now but not as much, and I found that for me, I don’t physically look disbaled, so I never thought I was disabled enough. Which once again is internalised ableism, like, I’m like, I need to use mobility aid occasionally, but I don’t look it, so why would I call myself that?”
“Yeah.”
‘It was when I started learning more about the disability community but reclaiming that word, was then I realised well, in my life, I guess I do have multiple invisible disabilities, and it took me a while to realise I’m disabled, and I’m a part of this community. And there are still a part of sections of each community who would say that I don’t belong in either, because there’s a lot of gatekeeping in both communities unfortunately.”
“Ok.”
“Um and, yeah, it’s just, in the end I was like, I really felt that I connected with both communities, but I guess in the disabled community, seeing the activism but also reclaiming what it is to be disabled, just really made me realise, like I want to be a part of this community.”
“Yeah.”
“And the activism for both communities can be the same but can be different. Um, yeah, it’s a hard question.”
“Sorry.”
“No, that’s ok. I mean I love having this conversation because some people identify with, I normally say maybe invisible disability, but someone on instagram has recently started calling it a dynamic disability, which I love, because it really resonates with me, because you know I might look fine, I can do everything, but then something might happen like cut open a frozen bagel, and you know I’m out of it for a month, which has just happened. And think the word disability and being disabled is seen as a permanent thing, like its a constant state, whereas with chronic illness, I see that more as a fluctuating thing. And I think it’s a personal thing. But as long as we’re not gatekeeping those terms, and I guess, if you don’t know what gatekeeping means, it’s like putting up posts or requirements to be able to access a community.”
“That’s a great answer, and I think it’s individual, absolutely. But you raise so many great points about the different communities. And definitely gatekeeping is something that many people don’t realise happens in these communities. For me, it saddens me to know that that’s happening. Um, I definitely have felt the sense of not being disabled enough as well. And interestingly I also I have read somewhere about dynamic disability and I relate to that, and I think a lot of people do, because it changes day to day, week to week. For me, even within a day, like I can wake up being unable to step on my foot at all, and then a few hours of resting means I can do more walking or whatever. So it resonates for me as well. And I guess one of the things that I was curious about in terms of your experience, cause I know for me, I was thinking about it, because of my disability, and my trauma history, I have some anxiety too, and whatever, I feel like sometimes I have within myself, I’ve got like competing needs. So I feel like my brain is saying to me ‘I really need to go for a walk and get some fresh air, and practice mindfulness. I’m best at practicing mindfulness when I’m walking. But then my foot can just be like ‘no way, I’m not moving out of this couch right now.’ So do you get experience sometimes? Anything like that?”
“Yeah, so much of the time.”
“Ok.” laughs.
“I have complex regional pain syndrome, which is also to do with the nervous system. It basically says, it tells my body that I’m in danger when I’m not. So um, it happened after I had surgery on my wrist. So some days, like most days, it might just be a twinge if I pick up something, but as I mentioned the frozen bagel incident.”
“Yeah.”
“I actually opened a frozen bagel and actually pulled the tendon I have CRPS in, and for the last month I’ve had this massive flare-up. So basically it feels like my wrist is on fire, and there’s nothing I can really do until it passes. And there are some management options which have worked, but knowing that things can change by me just picking up a cup of tea, or being on a bus and someone knocking my wrist with their bag, just changes everything completely. I also get a lot of fatigue, so it can be really really quick, or it could be a build up. And with my ADHD I like to move around, and go outside, that’s so important, but lately in Sydney it’s been really humid, and if I go outside it can flare up my fibromyalgia, so I get really bad muscle pain, but I need to move the muscles to get exercise, but if I exercise too much it can knock me out with fatigue for a few days. It’s almost conflicting access needs for myself.” laughs.
“Yeah, for sure.” both laugh.
“Um, and that’s just an example, and it’s like do I make the choice, do I finish work early and go to sleep for a few hours, which will mean my symptoms will be better, but then I lose two hours work, but then I might be able to work the full day tomorrow. But then there might be a flare-up tomorrow and I might not be able to work the next day. I think that’s the biggest thing I struggle with, and it’s like finding, it’s like a pangolin, and it’s finding that space in between, and knowing when I need to rest, but then also knowing, but then also knowing my symptoms will past, but then also knowing that I have to do thing. And with CRPS with my wrist, even though it’s in pain, it’s not actual damage, but I need to keep using it, otherwise I can lose functioning in my hand and the pain gets worse. Yeah, I haven’t figured it out. Laughs. I almost wish there was like, get what I’m feeling or experiencing like in an app, so I can go, ok what’s the most important thing.”
“Oh, I want that app.”
“Yeah, it doesn’t exist, but like it would be amazing, just to be like it’s like sometimes, I don’t know what’s going on. Um, I mean it makes life interesting, I mean you probably feel the same, it takes up so much energy and deciding like how much energy do I have today if this symptom happens, will I still be able to get home ok.”
“Yeah”
“Yeah, it’s, I haven’t’ worked it out yet.”
“And as we said things are changing with identity, I think that it’s similar in our bodies. You know, our bodies constantly change, that’s not something that I feel is still reflected properly in our health system. You know, because we are still viewed very statically. And I want that app, that imaginary app that we’re talking about, because I feel the same. My physio tells me I need to do these exercises 3-5 times a week, but then I don’t have time to do cardio exercise, and that’s really important for my mental health and my heart health and blah blah blah, and it’s like, and if I do everything that everyone recommends me to do I’ll have no time for anything else. Laughs. So how do you prioritise all of those needs? It’s really complicated.”
“Yeah and I mean, you mentioned navigating the health system. And I’m not disabeld or static enough to qualify for the NDIS, but, because my conditions are seen as changing. Um, and I don’t actually fit into a box, but I find it really hard that when people talk about the medical model, like, this equals disabled, or this equals you need this type of support. And it’s like, well, we’re all changing and life is dynamic and messy, and Iguess so are our bodies and minds, especially over the last year.” Laughs.
“Yeah exactly. And I think that’s an important point about the NDIS. For people who are not aware, the NDIS is the disability support funding in Australia. And that is not actually a good indicator of whether someone identifies or doesn’t identify with a disability, and it’s really important to note that a lot of conditions, quote unquote, don’t qualify for the NDIS, and there’s a lot of other reasons why people wouldn’t qualify as well, or wouldn’t know that they’re eligible, depending on their visa status, their English level, and other social circumstances as well. So just important to note that. And, Emily if you don’t mind going back in time a little bit, because we talked about growing up a little bit. I’m really, as someone who wasn’t born in Australia, one of the first things that I was introduced to in Australia was footy, I mean AFL here in Melbourne. Laughs. And I was told that sports is a really big part of the australian culture, and I saw that in a lot of places. So, can you talk about your experience of that, because I also noticed there’s a lot of I guess paralympians represented, you know disabled paralympians represented in the media, quite significantly I guess compared to what I knew previously before I came here. So can you talk about how you experience sports and if that representation shaped you in any kind of way?”
“Ahh, no.” Both laugh. “I really, growing up, like, I did piano and Irish dancing.”
“I did piano too! Sorry just a note.”
“Oh really? No , that’s fine. Um, and I did lots of instruments, my family is really musical. But sports I didn’t get it. It was actually horrible because I didn’t know how to play soccer. And I’d be the kid in the PE team, I’d be the last person chosen, I was really uncoordinated.”
“Same.”
“I hated it, and um, one thing I did enjoy ice skating and rollerskating growing up, I wouldn’t probably try it again now because if I fall over that wouldn’t be good for me. But, I didn’t get it. Like everyone would be the NRL, which is the National, Rugby League thing in Australia. Like, I just didn’t get it, like people just watching sweaty big men with tight shorts, like wrestling each other. Liel laughs. I just didn’t get it. I wanted to get it. I played a bit of touch football and oztag, I love that because you can focus on the tag and just run and get it. But yeah, I never got it, I’ve always wanted to be a part of the sporting thing, because it’s such in Australian culture, but I didn’t get it. I remember once I had to be on a basketball team, I had no idea how to play, and I couldn’t focus or get it, and anyway, someone tried to throw the ball to me, and it actually bounced off my head, twice. Before I caught it.”
“Good catch.”
“And everyone was like Emily, how could you not get it? And everyone in the disability community that is a huge representation being a paralympian, or someone who is disabled and plays sports, and I just don’t get it, and I wish I could see myself represented. But um, this might sound controversial, and this is just my opinion, but disability, like it doesn’t need to be overcome, and when I see a lot of paralympians, not all, but the way they’re presented or represented, it was like ‘this person had this accident, and they have risen up from the ashes, and pushed themselves, and now they’ve done gold for Australia, and you can too. Like, you need to get up at 5am and do this.’ And they don’t mention that had, they were quite rich and had access to you know, quite good emergency care and rehab, that they could actually afford to get, I don’t know, a really expensive, you know, they could afford a wheelchair that could play sports, that they had the support around them to actually get to the country to compete. I find that really hard, because it’s like, I would love to be able to stand up and go ‘yes, I’m gonna play tennis for AUstralia, or I’m gonna ice skate for Australia, I don’t even know if that’s in the paralympics.”
“Me neither”
“But I wouldn’t be disabled enough on their terms.”
“Oh, you wouldn’t qualify.”
“I couldn’t compete because I’m not physically disabled, technically I’m able-bodied, I’m able-bodied in my physicality. So it’s like, I can’t do that, but there’s no way I could go to the normal olympics. I’ve always struggled with that, because sports is such a huge thing in Australia, and I think a lot of people see themselves represented in paralympians, and that’s fantastic, but for me, it’s like, I don’t feel that i’m represented there. And there’s a particular type of image and a narrative that gets told around that, and I think Stella Young called it inspiration porn, and it’s this idea like, you can push through, just push past your disability. And you see pictures of this person has no legs and they still got up in the morning and did this, what are you doing with your life? And all this kind of stuff, and it’s like, no. Like, my life is not meant to be your inspiration porn, or for you to go, ‘now Emily feels like her hands on fire but she still wrote that blog article, so why aren’t you writing?’ Like, that’s not what I want to be. And I sometimes struggle, because, I mean I found people that I look up to now, but originally, someone with a chronic illness. Oh fan girl here, Tara Moss, who I love, whose an amazing writing, unfortunately has complex regional pain syndrome. And she was the first celebrity or someone in the media that actually has what I had, and she’s wonderful like she’s fashionable, she writes books, she takes pictures with her mobility aids, like she’s amazing advocate. And when I saw here I’m like ‘I found my sports person.’
“Yes.”
“And going, these are my people. And I guess a lot of people feel that way when they see a sports star or a paralympian, but for me I’m like, I don’t get it. Laughs. So maybe I’m not Australian. Laughs.”
“I think so many important points, and I don’t think it’s controversial to say that disability as something to overcome is a very damaging concept. And it is an ableist concept, and is rooted in ableism, and forms a part of the medical model of disability, and it impacts negatively on a lot of people, myself included. Thank you for raising these really important points, because I think how we are represented is extremely important, and if the narrative is only around overcoming our disability, it’s not a positive narrative. So, this is why we’re having this chat, which is wonderful. And I’m wondering if we can. And talking about doctors and the medical model, I don’t know if I told you this before, but when I was growing up I wanted to be a doctor.”
“So did I.” both laugh.
“Which now I can laugh at.” laughs. “Yeah because I looked up to these doctors who would eventually fix, quote unquote, fix me. Um, but then finally i realised that’s not what i wanted to do, and thank god I did. But I feel that, I guess, the reason I wanted to get into that profession, was maybe to be on the providing end of where I was receiving support if that makes sense. And eventually I got into mental health, because I feel I never got enough mental health support through the medical system. So that’s a long question to ask, because you work in the disability field as well, if you have a similar draw into the field, of wanting to give back or connect with community, or why do you feel that you chose that particular kind of work?”
“It’s a great question, it’s actually a very complicated answer. But I will say that I was drawn in I guess the disability community, because I realised how important it was for my voice to be heard, but also that I’m not the traditional sense of what you think of when you think of disabled. So, if that meant that providing support or bringing that understanding to the sector would help other people, then that was really important to me. But originally, I actually, I really wanted to be a teacher. I’ve always wanted to be a teacher. But, um, when I was studying at university, I think in my second or third year, was when chronic illness pain stuff started happening. And it was really hard to get support and accommodations for my ADHD, but then when this chronic illness stuff started happening, I couldn’t get the support to finish my practicals, and every time that I’d go on prac for a few weeks, I’ll have to take time off, I’d get so unwell. And everyone in charge, like all the lecturers, they’re like no, you have to do four days, you have to do it in a block, you have to do this, no you can’t get an extension, because you got an extension last time. Um, no we’re doing an 8am lecture, but we’re not going to record it, because we need you to be there physically. And there just were so many things, that it got to the point where it’s like I can’t keep doing this, and it makes me really sad. Because teaching and tutoring is what I love and, yeah, it kind of got to the point where I was like ok, I’m not going to be able to fulfill this course, this qualification, and I might not be able to actually be in this professional field and get the support I need. Um, and I’ve had other friends with chronic illnesses who didn’t get through the screening with the department of education because of, if they disclose they wouldn’t get through, but if they didn’t disclose and something happened, they wouldn’t be supported or covered.”
“Oh.”
“So, that’s a long story, but in the end, I was like what am I passionate about, and that’s education. I can still bring those skills and passions into the disability sector and a lot of information and things can be quite static and very, this is the way we do things, this is what disability is like. And it isn’t, where I work we are more intersectional. But traditionally it’s like if you’ve got a mental illness, you’re over here. If you’ve got a physical disability, you’re over here. I’m kind of intersecting at those, because I’m not fully one thing, but I’m not fully the other. And it’s like a mixed bag of lollies. laughs. I guess I feel really privileged that I can be in a space now where I can educate but also help bring that awareness that we’re not just tick boxes. And a lot of the support people might be after could be more physical, but then realising that not getting your physical access needs met can impact your mental health, and if your mental health isn’t doing great, that can impact that, and it’s connected. So help people in the sector, I guess realise that, disability isn’t someone in a wheelchair, laughs, isn’t just someone in a wheelchair doing motivational speaking. It’s like the average person might have to wait two years to get a wheelchair. We’re not magical beings who overcome everything. Laughs. It’s like we have lives.”
“Yeah.”
“It’s been really hard I guess, realising I don’t have the capacity anymore to be a full time teacher, um and if I did I would, that’s all I’d be able to do with the fatigue and symptoms. And, maybe in the future it might change. But I think what I’ve learnt I guess through my life,” both laugh, “because I attach so much of my passion and value and who I was as a person, to getting you know, um, to be a teacher and have that degree, not getting it was quite um, disappointing and frustrating. But when I realised I still have those skills, and they can be applied in different areas in different ways. It made me realise like, I’m a person, I don’t need to be defined, laughs, by a job or my productivity.”
“It’s still disappointing though, and I hope that everybody listening to this,” laughs. “would kind of understand the importance of access needs. And something like you have to be a full time teacher is completely ableist concept that we must remove. That is a loss, a massive loss to the educational system that you haven’t finished your degree that you were so passionate about and want to do that work. You know, there’s plenty of teachers, I know plenty of teachers that come in and do replacement work and part time work, a day a week or even less, and make a profound impact on children, on students. So I don’t think that should be in place at all. And it’s really upsetting that has still stopped you, and many others no doubt, in this day and age. I hope that we can do better, because we should.”
“Yeah, I mean there could be an opportunity, like if I got the degree, registered, and do part time work and all that kind of thing, but just the access needs to think, well, even to think, a basic thing, like going to the bathroom, um, you need someone to cover the class if you’re going to go to the bathroom. But I can get, like I’m gluten and dairy intolerant, and if I had to use a mobility aid, a lot of schools don’t have ramps or elevators, um.”
“No, as I’ve learnt recently.”
“Yeah, so, it’s hard. Some people can make it work, which is amazing, but in the end it was like I can’t sacrifice my health to do this.”
“No, absolutely. And I think it’s important to know that if people can make it work that’s great, but that’s the minority, and also it shouldn’t be a personal responsibility, because at the end of the day it’s the loss of all the students who are losing the diverse experience that you and many other disabled, potential teachers, would bring in. So I think that is important. And of course if the schools are not accessible, disabled children are discriminated against and are impacted by that negatively. And if anyone is going to tell me there are no disabled children in their school,” laughs. “They need to rethink that, because we know that there about 1 in 5 Australians have a disability, and that number is going to be close to that in schools as well, whether you know it or don’t know it. If you don’t know it, that’s the person’s responsibility. Um, and we’ll stop on that. I want to ask you about your writing. Because that’s one of the ways that you’re advocating, and writing about your experiences and what not. So would you say that your experiences of these diverse identities have shaped or are shaping your writing?”
“I think so. Um, for a long time writing was just a personal expression, so it was like I’d write and my heart would be on the page. I’d put something out and it was ‘this is me’ kind of thing.” Both laugh. “But it was a while ago I realised that as a writer, I could use those experiences and actually craft them to tell a story or to create meaning or make a point. And use my experiences not as my heart on the page, but to inform how to make that art, and I’ve had a kind of very complex relationship with my writing, because at one stage with the CRPS in my hand, I couldn’t even write my name without having to stop because of the pain. So it’s interesting, because it’s what I’m most passionate about, but I don’t necessarily get to put all my time and energy into it, because of symptoms and pain and all that kind of thing. But there’s a lot of authors that I’ve read even like essays and things like that, that they just hang around with you, and it’s like your brain just kind of chews on them in the background. And suddenly you’re like ‘oh I understand this, this is really great.’” Both laugh.
“Yeah.”
“I guess writing for me I see it as a kind of as a tool and something we can use to educate but also capture life.”
“Yeah absolutely. When we’re recording it is March 2021, hopefully we’ll be releasing very soon. But the last sort of year, I guess it’s been just over a year since the pandemic has began, and I know that a lot of people’s health has been impacted, myself included. I know that my pain has worsened over this time, cause I wasn’t able to access a lot of supports that help me, and my mental health has suffered as well at times. How has this year been for you, have you noticed any kind of improvements, highlights or difficult moments that you want to talk about?”
“The positives has been I’ve been able to work from home, and I can’t tell you how much energy and access that has brought me. Um which, has been a huge relief, but also just being able to work at my own pace, and that has been fantastic. But it was pretty crap year, um, because when lockdown started, so I think it was around this time last year, I was due to get my regular cortisone injection which help manage my pain, and they last about 6-8 weeks, they got cancelled. So my pain has kind of built, and I couldn’t access those injections because I have to go into a hospital room, obviously it’s close contact, and they weren’t allowed to do it because it wasn’t deemed essential. So my quality of life and my work hours reduced because I was in that much pain, and then, I mentioned earlier that I get a yearly infusion, and that was deemed by my private health insurance as not essential, and by the hospital. And then, when I did get my infusion, I did get complications, and because of the limit on the hospital, I couldn’t stay as long as I needed to resolve the complications. So that had a lot of effects coming out of hospital. I have had access to telehealth with my GP to get prescriptions, which has been amazing, and they’ll send the scripts to the pharmacy, which is amazing. I’ve been able to access psychology, over zoom which has been incredible, but being told that my medical needs are not essential, and having, like, I pay a lot of money to my private health insurance to get those infusions, being told no that’s not essential, even though I’m paying you so much money per month so I can access that, and also certain medications I’m on became hard to get. It was really hard. Because constantly in the news we were told, you know, that it will only affect people over 65 or with medical conditions or the chronically ill, but everyone else will be fine, if you’re healthy. And constantly being told that. It just, really hard. Because it’s like, um, you probably seen what’s happened in the UK, they issued do not resuscitate orders to a lot of people with disabilities without asking them, they just signed them. And it was the thought that if covid really kicked off in Sydney and I got it and we’re in a situation like Italy, and there was a healthy man, they wouldn’t choose to incubate me. It’s probably very hard to hear, but it’s like I don’t think normal, or non-disabled people realise what that feels like. And to hear people and see people on social media, catching up with people, or seeing celebrities ‘we’re going to our holiday house, we’ve all had covid test beforehand’, and all this stuff, and it’s like yeah if you got covid you’ll have access to amazing medical care because you’ve got money and you’re healthy. But it’s like, if I got it, I’m more at risk, more complications, and once again, I probably be last on the list. And I still don’t know if I’m over that. And I live quite close, I’m in Sydney, and when the cluster happened in late december, um, before that, people didn’t care. Like, there were 5G conspiracy coronavirus conspiracy posters all up around my community. I got yelled at at woolworths for wearing a mask in July or August,”
“What?”
“No one was wearing masks. It’s just, it’s hard, and I’m just, I don’t think you get over that. I’m lucky that I have people in my life who value me and I value them, but I’ve lost contact with some people that I was close with because the way they were talking about the pandemic and I don’t think they realised, that you know, my life isn’t disposable. And even like, it’s been amazing to have all these work from home, and zoom meetings and all this kind of thing, um, but I’ve been trying to advocate for those from back when I was at uni, and it was never deemed essential. And I was at one of the universities, trying to advocate, they wouldn’t record the lectures because you had to show up in person, and overnight they just magically happened, to be able to record and do online lectures, and it was just, it’s just, I don’t know, hard.”
“It’s mind boggling.”
“Because as a disabled person or someone who’s chronically ill I’ve been asking for these for so long and it’s like ‘no we can’t do this it’s too much’ but as soon as normal people need it, we can do it, it’s all fine. And now people are talking about removing some of these access needs, because we’re back to normal, covid’s not here. And it’s like, why don’t you actually use this to employ disabled people, or stay at home mums, or you know.”
“I feel that some people would say, well just be happy that all of these access needs have been met now and move on. But the way that it makes you feel as a human, like you’re sub-human, is something that is really difficult for someone to understand, but I share that experience of feeling that we’re not prioritised still. As humans. We’re not asking to be prioritised over someone else, just as equals, as someone who is worthy of saving and someone who is worthy of attending a lecture. So it is really important. And on that note I’m wondering, it’s a bit of a big question, but if you can tell me Emily, what does intersectionality mean to you?”
“Yeah that is a big question,” both laugh. “I think the best way intersectionality, or what it means to me, I recently read a young adult book, and I think it was called Meet Me At The Intersection. I loved the idea that it was actually a physical intersection, and that I kind of see it in two ways. So the first way is actually how I see myself. Because for so long I grew up with the medical model of disability, if you’re not sure what that is just do a quick google and google will summarise it, and, this idea that I had these diagnoses and it’s all separate. I’ve always felt really disjointed. But intersectionality gave me a way to view myself, where it all connects and joins in, kind of, like if you think of neurons of the brain, I guess, it’s like a big web, or mind map, where everything is connected, they all join into one thing. And I think being able to use intersectionality to view myself has really made me realise who I am, so intersectionality for myself made me realise I’m whole, and it’s ok to have different experiences and different things, and that’s ok. And then, as a broader view, I think intersectionality is so important because it allows us, I guess to use the same web model, but come and see people, and view people as whole beings, we start seeing people as multi-dimensional or whole beings that had these experiences, and I might have the same experience with you, but you also have separate experiences that I don’t know. So I think it’s a really good framework to start seeing ourselves as beings but also other people. And I think if we understand personally how we are intersectional, we can then begin to realise that other people share that too. I hope that that makes sense.”
“Yeah.”
“I think just using that meet me at the intersection. Acknowledging we have similar but different experiences, and if we don’t start viewing the world with intersectionality in mind, we lose a lot of what makes us human. So , yeah I think that’s my answer. But it changes a lot, and if you would have asked me that even a month ago I probably would’ve said something different. Because I’m still learning and I think if we can carve space for ourselves and realise that we are intersectional, it lets us be at peace with ourselves. Because it has that umbrella for ourselves and our community.”
“I love that Emily, and thank you so much again for joining me. We’ll have to wrap up in a minute, um, it’s been such a pleasure to chat. Now if people loved what you said, which I’m sure they will, and they want to check out your writing, your advocacy, or all the other beautiful work that you do, and your beautiful cat Jackio too, where can they find you?”
Both laugh.
“Probably the best place at the moment is on Instagram, my username is @ramblingravioli. Um I am on medium, which I’m not sure of my URL, and I’m in the process of kind od creating a website. But if you follow me on instagram, that’s a good place, and I’ll have any links there.”
“Great, and I’ll pop all those links in the show notes as well. Thank you again Emily, we’ll finish for now. But thank you so much, It’s been amazing having you on (Un)marginalised.”
“No worries, thanks for having me. I’m so excited about this podcast and I can’t wait to hear all the other conversations you have.”
“I like to respectfully acknowledge the traditional owners of the land on which I’m recording the podcast, the Warranjri people of the Kulin Nation, and pay my respect to their elders past, present and emerging. As we tell our stories, I want to highlight that traditional owners of this land have been storytellers for generations.
If you like this episode, make sure you subscribe and rate the podcast. It helps me reach more people and continue to do these amazing interviews. And to support the ongoing making of the podcast, go to my patreon account on www.patreon.com/LielKBridgford. And thank you for joining me.”