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Episode transcript

*Please note – each new line represents speech from a separate person. Italics is used to describe reactions.

“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.”