Jamila Main

Photo of Jamila Main
Jamila Main. Photo by Hussain Alismail. Image description: Jamila, a white femme with a light brown bisexual bob haircut, sits powerfully in their manual wheelchair in a white photography studio.


Jamila Main is a trained actor, self-taught award-winning playwright and disability advocate living and working on unceded Peramangk and Kaurna land in SA. They work across stage and screen, with accessibility for audiences and artists, queer joy, and safe modes of working being key components of their practice.

In this conversation Jamila discusses what ableism is, how to manage conflicting access needs, crowd sourcing image descriptions, the varying speed of “disabled time”, and that going back to “normal” after covid lockdown is anxiety provoking for some of us who are disabled because it means losing access to online opportunities that were increasing our ability to participate in the arts.

Jamila Main interviewed by Thembi Soddell – November 18, 2020

INTERVIEW TRANSCRIPT
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Jamila Main (00:00:01) – My name is Jamila Main. My pronouns are they/them, and I am an actor and playwright living on unceded Peramangk land in the Adelaide Hills in South Australia. I grew up on stolen Kaurna (ɡ̊auɳa) land on the Adelaide Plains. I work as an actor and a playwright predominantly, and that’s also working independently as an artist, but also as a, you know, actor for hire getting cast in other people’s stage and screen projects. But for my practice, the writing and the performing inform each other in how I make work and who I make work for. Sometimes I perform in my own work, but I also cast actors in my work and not appear in it other times as well. My work tends to be around queerness, disability, and the visibility and safety around visibility for both queerness and disability. I’m interrogating a lot at the moment; What we perceive as disability, what it looks like, who it is, and sort of challenging our preconceived notions of what ‘sick’ looks like, or what ‘disabled’ looks like. Yeah, that’s me.

Thembi Soddell (00:01:34) – Yeah, that’s cool. That’s great. Um, do you mind if I ask, uh, what’s kind of brought you to be interested in those themes? Like, I feel like it’s pretty obvious, but if you want to talk a bit about that? 

JM (00:01:46) – Yeah. I only started identifying as disabled in the last 18 months, having been chronically ill most of my life, and then it got really severe while I was at acting school training. I sort of just saw my old life, and my previous level of mobility completely vanish. It’s sort of important to me to process my identity through storytelling, which is also why I think why I write about queerness as well, and include non binary, trans or queer characters in my works, because I’m processing what this means for me and where I sit and what I feel and think about it. 

TS (00:02:37) – Yeah. I mean,  I’m pretty similar in my own work and often find it really interesting when people are coming from a place that’s meaningful to them, because I don’t know, I feel like I can connect with the work a lot more that way. I’m actually also interested in the thing you said about, like, ‘started identifying as disabled’, because I, like, I often think about this for myself too. Like where is that line sometimes between disabled and not disabled, and, uh, how useful it is as a label? Do you have thoughts around that? 

JM (00:03:11) – Yeah. I think cause like, endometriosis is so, uh, it’s an internal disease and there are quite few like visible markers of it. Like, I notice it, I notice my face looks different, like I get a different look in my eyes during really bad pain flare ups, or like the belly just swells, and you start walking differently, you start sitting and standing differently. But that meant for a very long time I didn’t know that I was like, disabled enough to be allowed to call myself disabled. 

TS (00:03:49) – I know that feeling really well.

JM (00:03:52) – I think it’s a really common one. ‘Cause I get a lot of people messaging me, going, ‘Can I say I’m disabled?’ And it’s like, oh, babe, that’s not my, like….  I’m not a gatekeeper. I can’t be like, ‘Yes, you are. Knight you’. (laughs)

TS (00:04:11) – ‘Welcome into the disabled world!’ (laughs)

JM (00:04:16) – Because I think it comes back to like, representations of disability in the media, and why I think it’s important to have representations of disability in my work, because we don’t have a huge array. Like, maybe there’ll be someone in a wheelchair, or someone with cerebral palsy or an intellectual disability. But that’s just a very small one narrow perspective of what disability can look like. So we don’t know that we’re a part of the community as well, and we don’t want to offend, like, the ‘real’ disabled people. 

TS (00:04:50) – Yeah. It’s weird, isn’t it? I was actually, I mean, one of the things I wanted to ask you was for a definition of ableism and I feel like this is a useful place to bring it, because I often think that comes from internalized ableism. To like, what is like, not thinking of yourself as disabled? like, yeah. Anyway. Do you mind giving me a quick description of, um, what ableism is?

JM (00:05:12) – I think for me ableism is prejudice, discrimination, but also unintentional and ignorant discrimination or prejudice towards people with disabilities. And it’s so interesting, like, I didn’t hear the word ableism until like, two years ago. 

TS (00:05:39) – Me too, pretty much. Yeah. And when I heard it I was like, ‘Oh!, that, yeah, that’s what it is’. 

JM (00:05:49) – Mmm, and like, I only heard it because I have a friend with a disability, and they started talking about ableism on their Instagram. And I was like, why have I never heard of this? I’ve heard of racism before I had friends who were people of colour. Like, I just, ableism isn’t really talked about in the mainstream media, and I’ve only seen it used within disabled spaces. 

TS (00:06:17) – Yeah. It’s really strange. Isn’t it? I mean, do you have any thoughts on why that might be? 

JM (00:06:23) – I think it’s because we just, like, ignore and erase people with disabilities at every opportunity we get as a society. And if those people are invisible to you, then you don’t have the discrimination against them; that’s also invisible. 

TS (00:06:45) – Yeah, okay. That makes perfect sense, actually. So, yeah. Um, it’s pretty weird when you, like, for me at least, when I realized I was like, ‘oh, that’s a form of discrimination I’ve been experiencing’. Um, I didn’t have a word for it and I had been doing it against myself as well. Like, um, I still do, all the time. I think it’s part of the reason I personally don’t, um, push for my needs to be met, which is why I’m starting to think about accessibility a bit more, like, oh, can I actually ask for some of these things to be accommodated? 

JM (00:07:24) – Yeah. My friend recently got an autism diagnosis in addition to other disabilities they have, and it prompted them to send out a list to all their friends and colleagues, anyone who needed it, of like, here’s a list of my access needs, and some examples of what you can do to meet them, and some examples of things that are not good for me. And I was like, this is amazing. I started writing my own and I was like, this is going to be really useful. 

TS (00:07:52) – Yep. Well, I was actually also going to ask you, as a practicing artist, what would you see as an ideal? Like what does accessibility look like as a practicing artist? Does that make any sense? 

JM (00:08:11) – Yes. Oh, I’m really feeling like I can really clearly identify when things aren’t accessible at the moment. Um, because like, grants are open, and residencies are open, and a lot of the application processes are just inaccessible to me because they’re not made with disability in mind, or different levels of ability in mind. And then things like venues so often are not accessible and maybe they’ll have a disabled entrance around the back and one disabled toilet that’s across the other side of the building from the rest of the toilets. And they think that because they’re got a ramp and a toilet that means, ‘oh, accessibility done’.

TS (00:09:00) – Yes. Yes. So what, um… So you mentioned two things there, venues and applications. What would you see in terms of applications? What makes it difficult and what makes it more accessible? 

JM (00:09:14) – Um at the moment, what’s really hard in this one I’m working on is the timeframe. Originally they announced it and it was a new grant that had never been done before. So I haven’t had it on my radar as like, something I should be preparing for. So they announced it and then the closing date was in four weeks, and they were like, oh, because of COVID, it’s only a two page application, which sounds simple and quick and easy if you’re able-bodied. But that is still a massive amount of work for me. And I’ve got acting gigs that I have to do. I’ve got auditions for things that I need to prepare and go to, and then I’ve got, um, you know, my health symptoms that I have to manage or like, you know, get hospitalized, or see doctors and manage pill prescriptions. Um, you’re frozen I hope you’re still here. 

(Break)

TS (00:10:15) – Yeah. So we were in the middle of talking about how applications for grants and projects and things have a really short timeframe, which makes them super inaccessible, which,

JM: Yes

TS: I have the same issue. Now, whenever I work with people, I try to say, hey, look, I’m not good at these, like, short timeframes. You can’t just leave everything to the last minute, even though I still have a tendency to do that. Yeah. I saw an application recently for a project specifically for people who were disabled that had a four week turnover. And I was like, that doesn’t work, and flexibility in deadlines is super important as well. That’s the one way I got through university, was like the flexibility with deadlines, so, yeah. 

JM (00:11:16) – Oh yeah. And it’s, yeah, it’s a massive one for me because I can easily lose two weeks to an agonizing flare up. Um, but I also made a post on my Instagram a few days ago about this, about disabled time. Like, we just don’t have the same number of hours in our day that able-bodied people do because of all the other things that we have to do to manage our health. And, like, we’re all freelancers as well, most of us. Because well, you know, ableism and discrimination and the inaccessibility of getting a long term full-time job. Um, I’m having to write these applications around myriad options of paid work, in addition to like, the fatigue and the mental power it takes to write a good competitive grant. Um, and the one I’m going for at the moment is like, ‘we really encourage people with disabilities to apply’. It’s like, uh, they ended up extending the deadline, which was great, and I thought it would be like, really helpful for an additional two weeks. But I’m still just like, how am I going to get this finished? 

TS (00:12:36) – Yeah. Well it’s, I mean, it’s tricky because on the odd occasion I have got in touch with people and said, hey, is there any flexibility on this deadline? They’ve always said no. Um, and I haven’t really said the word disability, so maybe I should do that and see, but it would be interesting to have a discussion with some of those funding bodies and things like that and say, hey, there’s always this thing, ‘we encourage disabled artists’, but it doesn’t really work if you don’t get rid of the ableism. 

JM (00:13:08) – Yeah. I think because these spaces are run predominantly by able-bodied people, a lot of whom might not have ever heard the word ableism, like they don’t lack the language or the knowledge, just like, ‘oh, we’re accessible’. No, you can’t just say that. What, how are you accessible? Like ‘we’re accessible for everyone’. No, that’s physically impossible. 

TS (00:13:33) – It’s like, yeah. It’s also like, even though I have a disability, I only know about accessibility for my specific disability. And I’m starting to realize how much I lack in knowledge and how I don’t create accessible works or shows and things as well, which is why I want to start thinking about this and figure out how to change that. So I do understand why this is an issue, but also like, don’t advertise yourself as, um, you know, yeah, you know what I’m saying. 

JM (00:14:02) – Yeah. I think also just like on that point of like, the accessibility of your own work as a disabled person, I think we are held to a higher standard and expected to be making broadly accessible work. I’ve definitely felt that in my work of like, oh, I don’t have the funding to get an Auslan interpreter in, but then because I’m disabled I feel a heightened scrutiny and sort of condemnation from able-bodied people, not from other disabled people, of like, well, you’re saying we should be accessible, but your not even doing it either. It’s like, yeah, ‘cause of all these other reasons, and you’re a, big company with resources. 

TS (00:14:49) – That’s something else I was thinking about for myself, and I’m curious to hear your perspective on this, is that thing of like, I started thinking about how I don’t necessarily have like, an accessible website or accessible Instagram and things like that. So I was like, you know, I need to at least start image captioning, but then I have this thing where I get pain from typing too much, like depending on where I’m at. And when I was thinking about that, I actually had pain where I was only messaging people via voice. So then I was like, well, I can’t do a voice description. And also, something I struggle with is putting things into words and particularly translating images, like abstract images into words is difficult. But then I don’t have the resources to hire somebody to do it. And so it’s kind of like, the barriers like that I have then create barriers for other disabled people. And I don’t really know how to resolve that. 

JM (00:15:53) – Yeah. I’ve done this before and I’ve seen other disabled pals do this before, of they’ll like, you know, post their thing on Instagram and  if they didn’t have the spoons that day or the ability to write the caption, the image description, they’ll go in the post, can an able-bodied person please write this image description for me in the comments?

TS (00:16:13) – Do people do that very often? 

JM (00:16:16) – Yeah. I’ve had a few people do it. 

TS (00:16:19) – Oh, cool. That’s a great idea, maybe I will start. It’s kind of like crowdsourcing labor. That’s actually the kind of thing I wouldn’t mind doing for other people as well, like, cause it’s not a huge amount of effort if it’s just one here or there. And that feels like a really nice way to do it. 

JM (00:16:36) – For a long time, YouTube had community sourced closed captions on their videos so that if the uploader didn’t write the captions, you were able to just write it for other people. But they are looking at removing that feature and going to like a paid captioning thing that you have to like, pay this company to put the captions on your videos. 

TS (00:17:01) – So you have to pay for it yourself?

JM (00:17:03) – Yeah. And people are, you know, having a bit of an uproar about inaccessibility. But yeah, it’s interesting how our own access needs and abilities can mean we can’t deliver the most accessible things to our own community. 

TS (00:17:21) – Yeah. Also, one of my things is extreme sensory overload, is kind of probably my biggest barrier to things. Can’t be in the same room with people with perfumes. Can’t like deal with bright lights at all, fluoro, fluorescent lights are an absolute nightmare. Um, but then, you know, I’ve had friends who have had vision issues and so having the low level of light that I need, they trip over things, and um, that becomes, yeah, a problem. And also like, people who have bad anxiety can sometimes use scents to ground themselves. So to just do that fragrance free thing can be a problem as well. 

JM (00:18:04) – Mmm. Yeah, I can’t remember who said this, but I think I saw a quote the other day saying ‘we’re one of the few marginalized communities who have competing needs…’.

TS (00:18:16) – Uh yeah, right. And so how do people resolve this? Or, do you have pictures in your mind about how this can work or how to choose who to make shows for, or?

JM (00:18:32) – Yeah, I’ve been thinking about this a lot lately, because it feels really cruel to be like, ‘well, I’m going to pick the deaf community and I’m going to make sure I’m as accessible as possible to the deaf community and like, sorry, blind community, that means I can’t do you’. And that just feels like a really awful place to do it from. And I feel like there must be some kind of middle ground where it’s like a rotating system of accessibility. Like, um, maybe these two shows have Auslan interpreters, and then these two shows  we’re going to have captioning, or these two shows it’s going to be really bright and then these two shows it’s going to be really dark. And just sort of like, rotate through people’s needs. And then if it was something in a gallery, or like a visual art exhibition, could you do something like, by appointment? So people could book in, I’m going to come see it at this time on this day, and I’m going to commit to coming then, and here is my access needs and the gallery then provides that in that, like, hour window that you go look at the exhibition in or something. Uh, I’ve just thought that there’s creative solutions, and we are artists. Isn’t our job to be creative? It’s like, can’t we also be like, at the forefront of making things accessible in new ways? 

TS (00:20:13) – It’s um, yeah, it’s a tricky one, no, I actually think it’s a really great thing to think about, cause I’ve been thinking about, hmm, I make sound art, can you make sound art for deaf people? Which of course, there are some people that do. Um, so I’m starting to think, what would that look like to bring into my practice? And I’ve started talking to writers about working with me about writing about their experience of sound, which is actually a super fun, interesting creative exercise in itself. So yeah, if you can bring it into the creative process, that’s great. But then it’s also like as an independent artist, you don’t have a lot of money. 

JM (00:20:50) – Yes. I think expenses and wanting to also pay people for their labor is a big obstacle for independent artists making things accessible. 

TS (00:21:01) – Hmm. So it’s just occurred to me that, uh, I haven’t yet asked you about where you live in terms of like, it being regional and what impact that also has particularly how that sort of then plays in the disability as well. 

JM (00:21:15) – Yeah, I think, uh, it’s really interesting, well, to me, where I’ve been in my life and whether it’s been classed as regional or not, because I grew up in Hallett Cove, which is sort of like a 45 minute drive from the Adelaide CBD, and it used to be considered regional. It’s on the coast and there’s still, like, near my house there are big stretches of paddocks, and there’s horses and sheep. Um, but you know, over the years it’s been getting quite more built up. Now I’m living in Mount Barker, which is considered regional, but it’s a 30 minute drive from the CBD. So I just find that really interesting because, um, like growing up in Hallett Cove, like I wasn’t able to qualify for regional grants or programs, but I had much less access to art than I do now in Mount Barker.

TS (00:22:22) – Do you know what the classifications are based on then, or? 

JM (00:22:27) – I’m not sure if it’s like, population, or like built up spaces maybe? Cause like Hallett Cove is now quite, like, it’s suburbia now, with some paddocks. Um, whereas Mount Barker  is getting more and more built up now. And I imagine within like 10 years Mount Barker won’t be considered regional anymore. 

TS (00:22:49) – Um, so do you have, um, like what kind of… oh, actually before I ask this question, I noticed it’s getting like 10 minutes away from one. Are you happy to just kind of keep going or do you need to stop? 

JM (00:23:00) – No, I’m okay. 

TS (00:23:02) – Um, yeah. So what was I about to ask? Oh yeah. So what are the challenges you have working as like, a regional artist? 

JM (00:23:11) – Um, I think Mount Barker is still quite separate from other artists out here. Like I’ll know of like one other like actor who’s like, in Nairn, a 20 minute drive from me or whatever. Um, and there’s children’s youth theater here, but there isn’t like a professional or a well-regarded independent theater group or company. Um, and theirs is very community based which Hallett Cove didn’t have, we didn’t have a community choir or community theater groups in Hallett Cove. And I don’t know of any like amateur or community theater groups in Mount Barker. So you still have to go to Adelaide to see theater, like maybe the library will have something during fringe, there might be a kids’ show performed at the Mount Barker library. Um, but there isn’t really anything for adults and there aren’t many spaces. There’s not like a venue where I could be like, hey, I’m going to do a show here. 

TS (00:24:28) – So do you feel a bit isolated? Or also, sorry, I should only ask one at question time. Do you find it isolating? 

JM (00:24:39) – Yes. Um, and because the city is only 30 minutes away, which is a smaller commute than when I was in Hallett Cove, it still feels like I have to go to the city to see art. And that’s where I get my jobs most of the time. Um, if I’m the head artist, if it’s my independent project, I can make things from home and make things with collaborators over zoom, but then it’s like, I still go and perform it in a venue in the CBD. 

TS (00:25:17) – How do you find working with people over zoom?

JM (00:25:20) – It’s, oh, it’s been interesting. Because it was something I was thinking about before COVID, and I made a show in 2016 that was performed over live stream before we had a reference point for that. Um, and you know, I had people telling me it’s not real theater if I’m watching it online. 

TS (00:25:49) – (sarcastically) Oh that’s nice.

JM (00:25:51) – Yeah. Thank you. Um, and so pre COVID, I was trying to think about ways, for access needs, if I can’t physically commute to a rehearsal venue in the city every day, how can I still be involved in a show and not be in the same physical spaces? And then I think COVID made that more available because I was able to pitch things to grants and residencies of, ‘cool, I’m going to be your artist in residence, but all my collaborators are not going to be in the same room with me’. And I think only because of COVID they supported me because they’re like, ‘oh, everyone has to do this’. And I worry that once COVID is kind of passed, and we’re back to normal, pitching something like that will be much harder to get people on board for. 

TS (00:26:53) – Yeah. I feel like this, um, everybody wanting to return to normal, I’m kind of anxious about it. Uh, cause it has been really nice. I’ve been, you know, I got to do mentoring and do it online, which meant I didn’t have to travel to Melbourne which meant that I wasn’t getting as sick, and I’ve been like, able to regenerate my health a bit, since COVID started happening ironically. And I have, you know, it was really fun, I got to compose a piece for Decibel ‘cause they were doing a two minutes from home project. And, um, it was great to be able to get invited to do this thing where I didn’t have to weigh up how many spoons is this going to take me, and does the fee match the amount of how much energy I’m going to have to put into it? 

JM (00:27:43) – Yeah, it’s been a really interesting time to be like a disabled artist making work. And zoom is really draining, but I think there are also ways around it and it’s better than not being able to make work. 

TS (00:27:59) – Yeah. Have you found that you’ve been able to find creative ways of using zoom at all? 

JM (00:28:07) – Um, we haven’t really, beyond just like, oh, set the camera up and I’ll, you know, perform, um, a segment of what we’re working on and I’ll like, get my collaborator to give notes. Um, but I was using Instagram live as a performance space as well, um, to sort of try and make the work accessible beyond like, you don’t have to join a Facebook event, you don’t have to download zoom and navigate across multiple platforms to get to the viewing space. If it’s on Instagram, you’re already there on your phone. 

TS (00:28:49) – You know how many things I have missed since COVID has happened because I have not figured out how to actually join the thing. I’m just always like, where are the super clear instructions so that I don’t have to practically get into tears cause I can’t figure it how to do something? Which is kind of embarrassing to admit, but [laughs]

JM (00:29:09) – I’ll be the same. You’re like clicking on the link in like, Eventbrite and it’s not loading, or it’s saying like, you have to log back in and it’s like, no. 

TS (00:29:17) – Yeah. Can we log in 5,000 times before you can make this event? And I’m always running late for things anyway, so it just makes it worse. I can’t believe I’m still running late for things when I’m at home as well. I’m just like, how does my brain not understand time?

JM (00:29:34) – I’ve been doing that as well, like, how am I late for a yoga class that I’m doing online in my living room? How have I done this?

TS (00:29:44) – Um, Hmm. So I guess, what are some of the other questions I was thinking of asking you? Just looking at my notes. Um, I suppose if you’ve got collaborators who are able-bodied or minded, um, are there things you kind of wish they knew, to make it a bit easier to work with them? 

JM (00:30:09) – Yeah. And I think I will put together a document and send it to people at the start of projects. Um, there was one person who wanted to bring me on as like a dramaturg to their project and set up front, like, send me your rider, send me your access needs in your rider. And I was like, oh my God, you’re establishing, like, you’re instigating it, not me, amazing. Um, but yeah, I do wish, it’s like the internalized ableism that we all have within us we have to undo, and our collaborators have to undo. And I think that’s going to be complicated and tricky and scary because it’s unknown and trying to find a new way of working. But yeah, like things like giving my deadline ahead of when it’s actually due, because I’m probably going to miss my deadline ‘cause a health thing will pop up, but we still need to get it done before it actually has to be done. 

TS (00:31:10) – I feel like that’s good for all artists, to be honest. I try and do that when I work with people, is just give them an earlier deadline, ‘cause everyone’s hopeless at meeting them. 
JM (00:31:20) – Yes. Yeah. And just like things like changing our expectations of how people are. Um, like I was stretching on a zoom call the other day because my pain was bad and I just couldn’t sit in a chair and I, um, knew that if I stretch, I’m going to relieve this pain and be able to get through this meeting. And the meeting just stopped when I got on the floor and they’re like, oh Jamila, are you okay? It’s like, yeah you know I’m disabled, I have flagged this before, but people haven’t, I don’t know. I think people can be a bit like, oh, we’re accessible and then not change anything at all. And assume that like, I’m a good person, I’m great, of course I’m not going to discriminate and I’m going to have this, of course it’s accessible. The people will come because I’m great. But then you see someone stretching on the floor and it’s like, ‘what’s happening’? 

TS (00:32:17) – So it’s pretty much like, that sounds like that’s about like, just don’t expect everyone to act in the same way, almost. Yeah. I kind of love zoom because like, I’m a bit of a, you know, I tend to need to move around a lot. Um, I’m a squirmer, otherwise I get into a lot of pain. But it’s been good on zoom because under the table, like I’m just constantly moving around and it doesn’t annoy other people as much. 

JM (00:32:47) – Yeah. I think a lot of our norms for how we conduct ourselves with each other in professional settings are ableist and it’s been trained in us, in learning institutions that were super ableist. Um, just things like, you know, we have to be sitting still and giving eye contact and nodding and listening. And then if someone starts like, eating a piece of food, we’re thinking they’re rude, but like, oh no, they might have low blood sugar and need to eat right now. Um, or they need to take their meds soon and they need something in their stomach before they can take their meds. And just sort of like, accepting that people can be professional without meeting what we’ve been told professional looks like. 

TS (00:33:37) – Yeah. I mean, I actually often find it easier to understand people if I look away and listen only, because I get a lot of visual stimulus, but you can tell people think that you’re not listening. And I do like people to know that they have my attention because that is an important part of communication. I do actually like to listen to people well, and it’s a shame that, I mean, I don’t usually tell people that though. I make sure that I do it the way I’m “supposed” to. Um, yeah. 

JM (00:34:11) – Yeah. I was in a room with, um, all disabled people the other day, which like when does that ever happen? Um, and it was so lovely because I realized I didn’t have to do the usual things. I didn’t have to put up all these walls or mask or cover things or hide things. I realized how much energy, when I already have limited spoons that I’ve been putting out into like, making sure everything looks normal. 

TS (00:34:42) – Yeah. It’s so much energy, hey. Like I didn’t even know how not to do it. I was talking to my social worker about this the other day and she’s like, well, so if you came here and you didn’t mask, what would you be doing? And I’m like, I mask so much I don’t even know how to like, not mask. And also I am really embarrassed about it, like, yeah. Which I got to get over. 

JM (00:35:07) – That’s really relatable. Yeah. When I was working on ‘How long can this last?’ with Emma Valente, we were talking a lot about portrayals of pain. And I had a sequence where I was like, taking the piss out of Hollywood portrayals of pain and dying as very like, feminized, beautiful, peaceful moments. 

TS (00:35:31) – [laughs] Yeah right. I hadn’t thought about that. Interesting. 

JM (00:35:36) – In those conversations with Emma I was like, I struggled so much with how I portray my own pain because it’s coming through knowing that if I look a certain way, the doctor in emergency isn’t going to give me drugs and give me pain relief. But if I don’t look in pain enough, they’re not going to believe I’m in pain. 

TS (00:36:05) – Yup. I mean, but it feels weird if you put things on, as well. I discovered that, uh, flying, you know how flying is exhausting because you have to go to the airport and you have to walk like a thousand miles to get to the plane? I discovered that I could actually ask to be taken on a wheelchair, right? And it made my life so much easier, but like people would go, is this for you? And they would be confused, ‘cause I look really able-bodied and I look really fit too, even though I’m not at all. And so I started kind of limping a little bit whenever I did it. 

JM (00:36:47) – Yeah. Oh, I’ve done that as well. Where I like, for the first time had the courage to book a wheelchair for the airport and I was hunching over a bit, and a bit slow, and like kind of put a bit of a pain face on. Just like, convincing other people. Hmm. 

TS (00:37:09) – But the flip side is when, like, when I’m in meetings or whatever, I am the opposite in that I’ll try and look like I’m not in pain at all. I have an incredible poker face. So yeah. If I think about visual representations of pain they’re me looking very normal.

JM (00:37:28) – And often when I am in a flare up, I’ll go very still, and I won’t move because any movement could bring more pain. And you’re so internalized at that point, like your focus is entirely on what’s going on inside you. So you do look normal. Yeah. And having to like, speak up to the emergency doctor and be like, I’m actually an uncontrollable pain right now, could you please give me that pain relief? And they’re just like, why aren’t you thrashing around? 

TS (00:38:03) – Does everyone only thrash around when they’re in pain? Like I don’t even know people that do that. 

JM (00:38:09) – No. Cause that’s exhausting and you’ve got to preserve energy to fight with going on inside, which I think is why we need…

TS (00:38:18) – Sorry, I just cut you off. That’s why we need what, sorry?

JM (00:38:22) – Representations of what pain and chronic illness and disability can look like and that you can never assume someone isn’t disabled. 

TS (00:38:34) – So does that mean you like to think of your artistic practice as a form of advocacy? 

JM (00:38:40) – Yeah, yeah very much so. Um, like so much of my identity or like sense of, yeah, I can’t not be an activist.

TS (00:38:55) – I… sorry, you go

JM (00:38:57) – I’ve always been the one who’s like, speaking up in school,  like ‘this isn’t okay, this isn’t right’. Um, And was always like, uh, would get known as a good student, but also like a bit labeled as like, you know, the feminist troublemaker. Um, yeah. And so I think it’s like, really natural for it to be a part of my work as well. But also that’s one of the ways I think we can change people’s perspectives and minds about things beyond, you know, a March that disrupts their morning commute, or like, traditional forms of activism. Like, I can get you when you’re at the theater and change your mind through empathy. 

TS (00:39:44) – Yeah. I mean, that makes a lot of sense. Do you struggle, um, like you mentioned that it’s quite tied up in your identity, do you ever like, wish it wasn’t?

JM (00:39:56) – Yes. I think I’ve become so known as an activist. And you know, I’ve done that myself, um, that I feel like a lot of the time I can’t not speak up because then people will notice and there are people expecting me to speak up. Um, and people message me and go like, ‘hey, this thing happened, could you like, post about it? Could you write about it? Could you also like, back me up on this thing?’ without checking in of like, do you have the energy, like, do you have the time to? Uh, are you even sharing this opinion with me? 

TS (00:40:38) – Yeah. As soon as you said that, I was like, wow, that sounds exhausting. I mean, it’s really great, but it sounds quite exhausting to have to… yeah. I mean, I really hate that, um, I mean, I’ve dug myself this hole, but I’ve now become an expert in trauma, which means like, for me to do my work, I have to talk about trauma, which is like not the most fun topic [laughs]. And sometimes I wish like, because my practice is quite tied up in my identity because, like, I dunno, sounds depressing, but who am I, if not an artist? And, um, then it just becomes like, where my art is about my illness. Then my illness becomes my identity and that is not super healthy, but I can’t get out of it. 

JM (00:41:28) – Um, that’s really, yeah, big mood. Yeah, I was like, what if I woke up and never had another pain flare and never had another like, endo thing happen? What if I went back to being, like, able-bodied? But that would also be a huge culture shock. 

TS (00:41:45) – God, that’d be interesting, wouldn’t it? I mean, I hope it happens. I hope one day they do actually find a treatment for endo. It feels like there should be one, right? Like everyone I know has it, it’s ridiculous. 

JM (00:42:02) – Yes. Oh yes. Um, oh, I saw something the day, um, I think it was in Lara Parker’s new book, I think it’s called ‘Vagina Problems’. It’s about painful sex and endo and all these other things. Um, I think it’s her book that I saw this in, but I might be wrong, it was like, ‘go to page 93 if you’re temporarily abled, and go to page 94 if you’re disabled’. But this is the phrase, ‘if you’re temporarily abled’. I got like, a bit excited because like, disability, anyone could become disabled. Tomorrow someone could have an accident or have the illness progress. Or like, you might just sprain your ankle and be in crutches for two weeks. And it’s this idea that I think able-bodied people are deliberately blocking out, ‘cause you don’t want to think of yourself as getting sick, or deteriorating in any way. And that’s not to say that disability is somehow inferior to able-bodiedness, but I think, yeah, a lot of people don’t think about that. 

TS (00:43:24) – Yeah. I just went through the process of applying for NDIS and it was a nightmare, because you have to write everything bad about like, everything, every way you’re not functional, which is the exact opposite of how I try and think. ‘Cause it’s really important for me to focus on everything I can do, not everything I can’t do. And focusing on everything I can’t do was pretty upsetting. Yeah. But also confusing, because like, sometimes you are functioning well, and then it’s like, well, am I disabled if I’m functioning well right now? And then, so what is this?… I kind of like the idea of temporarily abled instead of disabled. Yeah. I don’t know. Anyway, just the flips in my brain are quite interesting there. 

JM (00:44:17) – Yeah. That maybe we need to think of it as less concrete, as more like fluid and fluctuating sort of like, like genderqueer.

TS (00:44:29) – Yeah, it’s actually, it’s funny you say that, because my psychologist actually said to me, ‘how about you start thinking about disability in the same way you think about gender, because you’re non binary there and it’s easy for you to understand’. I was like, mind blown, which is cool. She was, yeah, that was a really clever way for me to, uh… But it’s much harder for me, because, I don’t know, I guess maybe because gender is part of me, whereas disability is much more confusing because I guess because it’s about social barriers a lot of the time as opposed to, oh, I don’t know. I get confused when I start thinking about it. 

JM (00:45:13) – Yeah. I think there’s something in that, of disability being fluid and fluctuating and like the levels of…

TS (00:45:25) – And how you can be both able to and disabled at the same time, it’s not one or the other. 

JM (00:45:31) – Yes. And then it’s like, we all have things that we have to be dependent on other structures and people for, whether you’re abled or not. 

TS (00:45:40) – So I’m just noticing, this zoom call is about to end because I have the free version. Um, do you want to kind of wrap up now or are there more sort of, is there something else you’d like to add to maybe this discussion? 

JM (00:45:56) – Um, ah, something about regionalism, I guess. Um, that like being regional can increase your wellbeing and your access needs, but can also inhibit them as well. Like what you were saying about being able to be in a regional like, more controlled environment for your own needs. 

TS (00:46:28) – Actually, this is, yeah, this is a cool conversation, actually. Do you mind if I stop this meeting and start it again? Just so we can kind of finish off that point a little bit? 

JM (00:46:38) – Sure

TS – All right. 

(Break)

TS (00:46:53) So you were kind of saying that, um, you wanted to talk a little bit about how living regionally can kind of actually be really helpful in terms of like, how much it helps your health, but then difficult in terms of accessing support as an artist. So do you want to talk a little bit more about that? 

JM (00:47:21) – Yeah. Oh, it’s so tricky. Um, particularly when COVID happened I felt really safe cause we were so separate from like, dense population. I think there’s only like 16,000 people in Mount Barker. Um, and like we’ve got a hospital, we’ve got plenty of doctors and we’ve got, like, plenty of food options. And it just felt like this nice little safe pocket. Um, but then it’s like, that’s a really basic hospital we’ve got. And so I know if I have a flare up, it’s still probably better to drive, um, out of the regional area and go to a larger hospital. Um, and just like, because so much is in the city, it’s a huge commute for me still. And it’s just so exhausting having to go and leave Mount Barker. But there’s like, I don’t know, there’s like this mindset of city people that Mount Barker is really far away and like, they’re not going to offer to come to me, but they’re going to expect me to go to them. And then everyone started doing the zooms and it was like, oh, this is so good. But, um, Adelaide had a really short stint of lockdown and then we had really low cases and we opened up really quickly. Um, in July theater was starting to come back on, and people were starting to have IRL meetings and being really excited about them. And that was really hard to see, um, and to be losing online access to things. And people, you know, stopped making work for online, and were expecting everyone to come back into the space. And like, that was actually quite emotionally hard to see so many people, like, celebrating no more zoom or no more this and that. Um, and like that anxiousness of like, people want to go back to how it was and that wasn’t the most accessible for people. 

TS (00:49:45) – It’s like, yay, let’s go back to being left out, really looking forward to that. Um, and being like, different compared to other people. It’s kind of nice, everybody’s at home at the moment because they’re sort of accessible just on a social level too. 

JM (00:50:02) – Yeah. And I was, I was just really hoping that people would have more empathy for disabled people and be like, oh, I was trapped in my house for two months, I understand what it must be like for you, 

TS (00:50:15) – But I guess they’re not trapped in their house in pain, when I think that’s a bit different. Like, I was very surprised people could still work and had energy. I was like, what’s going on? Is that what other people are like when they’re at home? 

JM (00:50:29) – Yeah, I sort of just felt like, can’t we all just go on leave and not work? Can we all just have like, a joint decided upon state of rest and we all just rest and take care of ourselves? 

TS (00:50:47) – I don’t think capitalism would be happy about that, but maybe I shouldn’t go into capitalism right now (laughs). Um, but maybe what I will ask though is, do you have thoughts on what presenters could do, or venues could do to actually, yeah, make it feel like you can be involved? 

JM (00:51:07) – Mm. I think still keep zooming things. Like, don’t just give up on that because you’re like, ‘oh, we’re back in the world and everyone’s going to come to the live venue’. No, still use cameras and any technology you have to stream things online because I think it’s also important that it’s happening, that you’re engaging with it at the same time other people in the physical space are engaging with it, that doesn’t feel like ‘and here’s the disabled option’. 

TS (00:51:35) – Yes. This is true. 

JM (00:51:37) – Um, cause like, so often when you make something accessible, it benefits able-bodied people as well. Um, because they have needs that are also not being met. They might just not be as debilitating as ours. 

TS (00:51:50) – Um, that’s it. I mean, oh, sorry. You keep going. 

JM (00:51:56) – Oh, it’s just something I’ve observed. A theater group I’m with, we all do a check-in of how you’re feeling. That benefits everyone, not just a space for disabled people to be like, ‘I’m in pain today’. 

TS (00:52:11) – Yeah, this is true. I mean, I, as somebody who’s, you know, done every form of therapy on the planet because my disability’s psychosocial, I’m just like, everybody could do with learning these like, interpersonal skills and these emotion management skills. Cause like, people without psychosocial disabilities struggle with this stuff too. And, yeah, it kind of blows my mind that a lot of people don’t think about how it benefits them to be more inclusive too. Like, it’s actually, you know, more interesting. You have more interesting conversations if you’re not just speaking to the same people, and you, um, I dunno. It was just like, there are no drawbacks in my mind. Only benefits. Except when it comes to conflicting access, that’s a more difficult topic. 

JM (00:53:06) – Yeah. I just keep seeing it, of something accessible get implemented and then seeing able bodied people enjoy and appreciate it.

TS (00:53:20) – Um, so I’ve been reading, have you read Care Work, at all? It’s a book. 

JM – No

TS (00:53:28) – So that sort of outlines the history of disability justice versus disability rights. And that was really eye-opening for me, because it sort of comes from the perspective of disability rights is more mainstream, and more accepted, but was pretty much, uh, run and dominated by white people. So they came to creating this sort of idea of access that was still not accessible. So it’s interesting to me to think about that, and what… Also, yeah, the levels of exclusion within disability access organizations, which I think operates on all sorts of levels. And because people do have this idea in their head of what disability means, which is not… yeah. Anyway…

JM (00:54:15) – Yeah. And I, uh, there was like a big shindig in the theater world this week where they cast a cisgender actor as Hedwig in ‘Hedwig and the Angry Inch’ in Sydney festival. So, um, the trans community and the queer community were raising a lot of concerns with this, a lot of outrage. And, uh, in my role as the EDC co-chair I was supporting these people, and, um, we were scrambling behind the scenes going, what can we do? And people were sharing that clip from disclosure. I don’t know if you’ve seen it, of, an activist talk, talking about how, when cismen play trans women, it perpetuates this social understanding of the social misconception that trans is a costume that is then taken off by someone at the end of the day. But I also think that’s what happens when able-bodied actors get cast in disabled roles. That, uh, able-bodied people are then sort of trained to expect people to be lying or deceiving about their disability as well. 

TS (00:55:29) – Oh, I hadn’t actually even thought about that much. I mean, I did see that clip you were talking about in terms of the, I think I saw it on your Instagram actually, um, yeah, I hadn’t thought about that. That’s really interesting. It’s so funny how ableism is almost the thing I find most difficult to spot. Really blows my mind.

JM (00:55:54) – Because it’s just so normalized. 

TS (00:55:55) – It really is. 

JM (00:55:57) – And then someone will be like, ‘oh, hey, that’s really awful’. And you’re like, ‘yeah, it is’. 

TS (00:56:02) – Yeah. It’s like, oh, so this is why I hate myself. It sounds extreme, but it’s like, you actually do think that you’re just lazy or incapable or, um, all sorts of negative things that I won’t go into.

JM (00:56:18) – Yeah. I’m fighting so hard to stop gaslighting myself, and being like, ‘oh no, I’m not actually in pain, I could stand up and walk if I wanted’.

TS (00:56:26) – Yeah. Well, that’s what I’m always like. ‘So I could, if I really wanted to, it’s just really hard.’ But then I’m like, but does everybody walk around like this? Like, I feel like life is probably hard for most people. Like, is it? I don’t know. I just can’t quite conceptualize what it’s like to just… yeah, I dunno. It’s confusing. Anyway, on that note, anything else you want to add or should we wrap it up there? 

JM – I think that’s good.

Transcript by Casey Nicholls-Bull