Darcy: Welcome to Transdemic: Trans and Gender Diverse Experiences of the Global Pandemic.
Gemma: We are recording this episode on the stolen land of the Wurundjeri and BoonWurrung people of the Kulin nation. We pay our respects to their elders past, present and emerging. Sovereignty was never ceded. Always was, always will be Aboriginal land. We’d like to particularly acknowledge any brotherboys or sistergirls who are listening, and the work of Black Rainbow, the national advocacy platform and touchpoint for Aboriginal and Torres Strait Islander Lesbian, Gay, Bisexual, Queer, Transgender, and Intersex people. Head to http://www.blackrainbow.org.au/donate/ to donate.
Gemma: We would like to acknowledge the support of our gold partner, Drummond Street Services’ Queerspace, who provide counselling and peer support for LGBTIQ+ people, and professional development for organisations who work with LGBTIQ + people and their families. Queerspace is also the proud home to some of Victoria’s leading LGBTIQ+ community advocacy groups including Transgender Victoria, Parents of Gender Diverse Children and Rainbow Families Victoria. Contact 03 9663 6733 or head to queerspace.org.au to find out more.
Darcy: We’d also like to thank Maribyrnong City Council’s “together apart rapid relief fund” for their support.
Sam: Just a note before we start: this episode contains references to mental health issues, suicide and difficulties accessing gender affirming healthcare issues that some of our listeners might find distressing. If you need support, contact Qlife on 1800 184 627 or lifeline on 13 11 14.
Sam: Welcome to Episode one of our four part series: Trans healthcare and experiences of disability during the pandemic. But first, some quick introductions. My name is Sam Elkin, and I am a trans masculine writer, podcaster and community lawyer living in Melbourne.
Darcy: My name is Darcy I'm a trans masculine person working as a doctor in rural hospitals.
Gemma: And I'm Gemma Cafarella, I'm a cisgender woman, a radio presenter and podcaster. And I'm also a community lawyer. I live in the western suburbs of Melbourne, Sam to kick us off, why don't you tell us a bit about why you wanted to do this podcast?
Sam: Yeah it was actually an unsuccessful pitch to Midsumma’s Living in the Queerantine project, which was calling for people to create work about expressing queerness during the pandemic during the first phase of the lockdown back in April. But yeah, decided to push on with it and I’ve now had twenty-five conversations with trans and gender diverse people from across so-called Australia about their experiences, and I really can’t wait to share them with you all. Episode 2 will focus on Policing the Pandemic, Episode 3 is about Social Isolation and Love Online, and our final episode is called Home Economics, about experiences of home and job losses during COVID-19. In our first episode, we’ll look at trans and gender diverse people’s experiences of healthcare and disability during the pandemic. So we’re very lucky to have Darcy with us, who’s a doctor who’s been working throughout Victoria during COVID-19. Darcy, what’s that been like?
Darcy: Yeah, it was scary at first. I was really paranoid and when I get home at night, I would go into my backyard and I strip naked. I wouldn't bring the clothes inside the house.
Sam: Has there been enough PPE (Personal Protective Equipment?)
Darcy: Yes, a lot of it's been changing brands a lot. Definitely of varying quality. I remember a photo of you in some scrubs, I think that looked like they were maybe from the early 20th century. Yeah, I still have like that where they were from they had hyperbaric unit printed on them in sort of Correctional Facility font. I have theory they were from a Navy hospital. Hyperbaric units treat people; divers with the bends. Anyway, they were unusual looking scrubs made a horrible rough fabric. I did email a few people at the hospital to work out who got them and where they were from. But no one replied.
Gemma: It doesn't surprise me. I'd like to think that hospitals were focusing on things other than the documenting the history of their scrubs! Before we kick off into the experiences of our guests, I want to ask you to for a bit more of a personal take, as to trans slash gender diverse people who have experienced the first few months of this pandemic, what's the first thing that comes to mind about what it's been like for you specifically, as trans people?
Sam: I think when the lock-down was declared, I got really frightened because my doctor's appointment to get my script of testosterone was also cancelled at the same time. And I think my particular doctor was just unwell. But that kind of led me into the spiral of concern that, you know, I wasn't going to be able to get my script because I ran out of T (Testosterone) and was quite anxious about getting it. And I've had some difficult experiences with like mainstream GP’s in the past. So I'm very conscious of trying to book in with a specialist, gender affirming GP or somebody has a track record of being able to provide that care in a respectful way. So yeah, I was scrambling around to try and find an appointment with another kind of inclusive GP that was over on the other side of the town and that was over in the city of Stonnington, at that time, that was where the most of the outbreak was happening. So that was a bit of a kind of weird experience. And I think since that time, actually, probably most of my fears haven't been realized. I've been able to get appointment since and that's been really good. But yeah, I think that there's very, like high level of anxiety for, at least for me, because I'm very, very selective about who I want to get healthcare from. So I think the experience of COVID has just made me really anxious about that and when you see images of healthcare systems being overwhelmed across the world, it really does create a lot of fear.
Gemma: When you say that you've you're kind of wary about the kinds of people you seek treatment from. And you mentioned that you've had some negative experiences with healthcare, what are you talking about there? What does a negative experience of healthcare look like?
Sam: Oh, well I went to a new GP over in the western suburbs where I live because I thought I should stop trying to take a spot from you know, one of the very few trans and gender diverse specific health services that are available go who service the TGD (trans and gender diverse) community. But unfortunately, this new GP service completely up my data, you know, my data records wrong so I was listed as female on their health records, and they got my name wrong so they wrote Elkin as my first name and Sam as my surname, which I think might have just been a data error, but I think they thought my preferred name was Elkin, I just think they got extremely confused about the whole trans thing. Then I had this sort of peculiar experience where I was trying to get a mental health care plan about a completely unrelated thing. And, you know, the doctor I was speaking to asked me if I wanted to put the reason for the referral down as being transgender. And I was just like, no, at what point did I even mentioned that as an issue? You know, it's just that sort of low level stigma, I suppose the idea that you know, your trans history has anything to do with your presenting mental health concerns that really frustrated me, particularly because, you know, it's a service that I expected more from so yeah, it just makes me hesitant because when you go to a doctor, you're probably not having a particularly good time already. And then, you know, having a shitty experience like that just makes you not want to go at all.
Gemma: I guess the equivalent us sees people out there as I've never asked, I've never been asked by a doctor whether I want the reason for my visit to be recorded as being cis you know? And if that happened, I would just be so confused and blown out! So, you know, very weird. Darcy, what about you? What are your experiences of the pandemic? I mean, it's a bit weird given the conversation we've just had I guess in in many ways you're just people who have experienced this pandemic and perhaps me asking you this question is a bit akin to the doctor asking whether you want your visit recorded as being trans. But what have your experiences been in relation to gender etcetera?
Darcy: Look, not much has changed because I've been going to work as usual. Yesterday got asked if I liked Ellen, so that was weird.
Sam: The only question worth asking anyone! Well, let's get on to the conversations that I've had with over 25 trans gender diverse people across Australia. I think the thing that we should start with that affected many trans and gender diverse people is the cancellation of elective surgeries.
Gender-Affirming Surgical Healthcare
Teddy: My name is Teddy Cook. I'm ACON (AIDS Council of NSW) manager of trans and gender diverse health equity. I also moonlight as an adjunct lecturer for the Kirby Institute sexual health program at the University of New South Wales and I'm a board director on the Australian professional association for trans health also known as Auspath. I live in Sydney on Gadigal land which sits in the Eora nation. Elective surgeries… but even the word elective makes it seem optional, but it just means not urgent. We’ve seen elective surgeries be postponed or cancelled across Australia, and even though they’re starting to come back, very slowly and in a staged manner, I know chest surgeons in particular, but other surgeons who do other surgical interventions, are in regular contact with people on their waitlists. It is harder for people who are trying to see a surgeon, trying to get an appointment, and that’s just not happening really at the moment.
Johnny: My name is Johnny Valkyrie. I'm 23 and I live on younger and terrible land in Queensland. My pronouns are they and he. I am gender queer, trans masculine, transgender, homosexual and intersex. I come from the Eora nation or Sydney in New South Wales and I've been living in Queensland for almost 10 years now. I have a background in education and community service and I am a history writer for transgender, gender diverse and sexuality diverse people and cultures in history. I waited to have this procedure from the time that I realized I was uncomfortable with the way that my body was developing. And it was not until two months ago that I was able to have this. My surgery happened one week before. COVID-19 restrictions were put on what was called elective surgeries. So I really got lucky. I am glad because I had actually anguished over this, I wondered whether my affirmation procedure was going to be postponed and how long for if it was then at least I could stay indoors and not have to bind because one of the main reasons I had this procedure was due to chronic pain, not only dysphoria, but the chronic pain of binding. In Queensland it gets really hot. And so if you're wearing a binder in Queensland , you are going to sweat you are going to get rashes, you are going to feel uncomfortable 99% of the time, at least I could get away with not binding in the comfort of my own home while social distancing in quarantine. That's what I thought to myself, but it became increasingly urgent for me to have this procedure and I called my doctor a couple of times that week and she said, ‘I don't have answers for you, but we'll do everything we can’. And so I packed my bag, not for the surgery but for the psychiatric hospital. Because if I was not able to have this surgery that I worked hard to pay for, that I needed for my mental health and for my sense of self and connection with my body, then I wasn't sure what kind of state I was going to be in. So I was preparing for the worst. And then I got the call 48 hours before my surgery date to say that there had been no restrictions placed as of yet and it was going to go ahead and the relief was incredible. I knew that I didn't have to wait any longer. And I was going to take one of the first steps to aligning myself with myself.
Lore: Hi, my name is Lore, my pronouns they/them and I live in Melbourne. I am actually preparing for a hysterectomy on the 30th of June, which just snuck up. Because when the pandemic stuff hit, there was obviously a lot of uncertainty about anything that had been scheduled surgery wise for everyone, and I just sort of didn't think about it because I didn't want to be shocked by it not happening. So I just assumed it wasn't going to happen and didn't think about it at all, because there was no point sort of wasting precious energy on worrying about it. So I very neatly compartmentalized that away, and then only recently sort of had the phone call going, “Hey, we can do this if you still want to.” I've had some very helpful comments from people who have gone in for blood tests or to get the COVID swab come back and say that they actually feel safer in that environment because they’re so on top of it. So risk wise, I'm feeling good. I'm more worried about the sucky part of the surgery itself, which was always going to be the case, which for me is the invasiveness of it. I've heard that the initial sort of waking up and recovery process is a lot tougher than top surgery, which I also had last year.
Sam: So Darcy, Teddy there was talking about the name ‘elective surgeries’. What do you think about the name? Is it? Is it a bad name, and should we should we give it a different name because it's annoying everybody?
Darcy: Yeah, maybe. I mean, we can all hear the conservatives in the background, saying that, you know, that we shouldn't be having these kinds of surgeries at all. So when I say elective, I hear, we (as a community) hear ‘unnecessary’, you know, they're not even publicly funded. We really sort of have a difficult time arguing for the surgery. Is it a treatment for a mental health disorder? Or is it you know, an avenue for gender-bending joy, or just to make life easier? The decision for surgery means something different for everyone. So, you know, I'm not sure that the term would ‘elective’ would carry so much with it if we were talking about a different surgery. Elective surgery just means that it's planned. It might be urgent, it might be life-saving, but no one has to jump out of bed in the middle of the night to perform it.
Gemma: Darcy, obviously people have been quite upset by having, ‘elective surgeries’ pushed off or delayed because of the COVID-19 pandemic. Why is it that medical staff might try to delay a surgery like this? What kind of risks are there for having people in a hospital while there's this quite contagious disease floating around? I'm sure.
Darcy: Sure, there are a couple of reasons, I think for the delay of surgery is one of them was that hospital resources were all being pulled into COVID. So various things were shut down, some electric surgeries just for in one of the hospitals I was working at. We just needed the ventilators that they would usually use in surgery, we needed the space to isolate people. And then another reason was the risk to staff. When someone goes in for surgery, and they get a general anaesthetic, you know, that involves controlling the airway. And it's sort of a lot of the virus can be sort of put into the air during that process and can be very high risk if they do have COVID.
Access to HRT
Sam: So people also talked about the concerns about the possible impact of COVID-19 on accessing HRT, Darcy, can you give us a very, very brief rundown on the absolute basics of hormone replacement therapy?
Darcy: Yes, and this is absolutely basic because I would like to point out that I have no specialist training in transgender medicine. But HRT stands for hormone replacement therapy and everyone needs some kind of sex hormone because outside of manifesting secondary sexual characteristics we develop in puberty or medical transition. They also have other important functions such as maintaining bone health. So trans people and cis people lacking sex hormones because of the removal or dysfunction of the ovaries or testes need sex hormones. And even if you don't have a shortage of hormone replacement therapy can also literally replace your existing hormones roaming in your body as the hormones you take as medicine can suppress your body's own production of sex hormones. Both estrogen and testosterone come in a variety of forms injections, pills, creams and gels.
Sam: Now Gemma, as someone who’s accidentally transitioned, anything you want to say?
Gemma: Sam, you're being very funny. So just to give our listeners some context, I was concerned that I might have accidentally exposed myself to Sam's testosterone or T, because they were using a cream, and we would often muck up our towels in the bathroom, and I realized that I was starting to get more hair on my body. Sam has pointed out that as someone with Italian heritage and pushing into my mid-30s, that what's probably actually going on is that I'm just turning into all my old Auntie's! But I was a bit concerned for a little while that my additional hair was the result of accidentally transitioning. But everyone replays to know that my additional thigh hair is probably just me following in the footsteps of my Auntie Deanna, and my Nonna before her!
Sam: Good to know! So you know, in terms of actual shortages around hormone replacement therapy, I've heard people talking about shortage is around access to estrogen.
Simona: My name is Simona Castricum. I'm a musician and architecture academic at the University of Melbourne and my pronouns are she/ her. I know that there has been some chat around shortages and but it isn't something that has directly affected me yet, and I hope it doesn't in the future. But it is definitely my concern, a huge concern. If there's a bit of sort of spike chatter around that kind of stuff then this has the flow on effect of, I guess, hoarding. The last thing we want is for people to hoard medication, in that sense. I just read on social media last week that Equinox had said that there's a shortage on Progynova- two milligrams. I went into a bit of a panic about Okay, where are my scripts, and what’s my local pharmacy got and what doesn’t it have? And also just like scrambling into my drawer to see how much I had too. So I guess that's the consequences of that information going out.
Gemma: And that was Simona Castricum who provided us with her amazing track The Half Light to use as our theme song.
Sam: For many, it meant a delay to their plans to start HRT.
Cedar: My name’s Cedar, I use they/them pronouns and I identify as non-binary I live in Wurundjeri country, in Melbourne. I do some academic stuff and I do some creative stuff as well. Finally, like I finally had my appointment then I had two more appointments booked that were going to be within a month and then I was going to be on T. But then the pandemic happened and that kind of got sort of indefinitely moved forward or definitely like, move it back. I guess it's the better way of saying that. Yeah, sorry, I kind of at the start was like it hit kind of like the end of March, I think is that sort of the end of March and I was like, Damn, I was, I would have been on T today. Like, if this was not the pandemic and that and I don't know when I will get to do this thing now. And so that was kind of pretty stressful at that time, but then yeah, I had like a phone appointment by the like, they sort of got things together by the end of April. And so then by the end of April, I was having kind of phone appointments. And that was really smooth and really nice. Like, the front appointments that I had. I found them easy and maybe like, even easier than being having in person appointments, really, to talk about these sort of things. And yeah, after that it was really smooth and yeah, really lovely.
Yves: My name is Dr Yves Rees. My pronouns are they/them and I'm a historian at Latrobe University in Melbourne. The beginning of lock-down coincided with me sort of deciding to pursue medical transition, which is something I've been endlessly debating with myself for the past two years or so. I had socially transitioned last year at work with friends changing my name, but I hadn't undergone any medical treatment. In the early months of this year, I decided that that's what I wanted to do this year. And so for me, one of the kind of first trans experiences of lock-down was this realization that wasn't going to happen immediately or, you know, perhaps not for the foreseeable future. Because so many health clinics shut down, you know, elective surgeries were suspended. I had this real sense of the 2020 I planned for myself falling away, and there was some sort of grief attached to that. But then I kind of also quickly found that in many ways, the experience of complete lock-down was incredibly beneficial to my mental health because not really having much contact with other people meant I wasn't really being gendered or misgendered by them. It was one of those experiences of really kind of realizing how incredibly relational gender is, that when I was alone in my apartment, you know, just bonding with my cats and my plants, my gender just ceased to be a source of stress or worry, I could just be me, I could just be a person. It was very similar to experience I've had in the first week of January this year when I went on a five day hike by myself in Wilson's Promontory. That hike was one of the best experiences of my life for many reasons, but one of the things that made it so incredible was this sense of just being completely free from the trappings of gender, just being a living creature out in the forest and the trees not giving a damn what gender I thought I was or they thought I was just being a human and it felt very similar during the period of lock-down because you know, prior to that, I would be misgendered every single day, you know, I'm a trans masculine non-binary person, the world in general really struggles with the concept of non-binary people. So even people who know my gender identity and know my pronouns, they still misgendered me every day. And for the world in general, I'm just still read as female 100% of the time because I have a high voice. I don't know for whatever other reasons they read me as female, I haven't, you know, I still have hips. And so it was just, it was actually just divine. To be just a person living in the world with my cats so in many ways, lock-down was a really beneficial experience and a kind of clarifying experience that it enabled me to just be with myself without input from other people interpreting me and telling me how my identity in the world. So it gave me a sense of calm and stillness and ease with myself that I haven't felt for some time slash ever, but I think it also put into question my desire to medically change, because I had decided to do that on the eve of lock-down, but with this kind of new ease in my skin, I felt it during lock-down, it sort of made me reflect on how much of my desire to medically transition to take testosterone was just a desire to become more legible for the world, to step out of the messiness of incomprehensibility of a non-binary identity and I don't know if I want to give it in that way? I'm not saying take medically transitioning for people is giving in but I felt like maybe for me, it was a kind of response to finding being non-binary so hard and what looking for sort of an out thinking, Well, you know, being not a woman, it's untenable to be read as female, maybe it will be easier to be read as male. Maybe I'll just do that instead, when you know, the truth is I'm not male. I'm non binary. You know, I'm going to be placed in a binary gender box one way or another. And so maybe it's okay for the time being just to kind of say who I am.
Travis: One of the factors in why I stopped taking HRT was “what if I can’t get access to HRT at some point in the future? So there were a few decision factors but yeah that was one of them. I’m really concerned for people who are on it but are unable to access it because it is so important.”
Sam: I asked Travis if he’d thought about situations like this happening before.
Travis: Situations that I thought were really outlandish, like the collapse of global supply chains or being in a country where I couldn’t go overseas for an extended period of time. I’m not a full prepper but I thought there might be a pandemic and then LOL, it’s never gonna happen, and then it happened, so…:
Sam: I've noticed that my cream Androforte is made in Mount Lawley in WA, which is quite funny to me because I'm originally from WA, and the idea that my gender-affirming healthcare is coming from there and quite ironic to me now, given that I found it to be such an unsupportive place when I lived there. So we've always got Perth!
Trans-specific allied health
Gemma: One thing that has popped up on my social media, you know, and in other places a lot has been people complaining about this seemingly trivial topic of not being able to get their eyebrows waxed or, you know, not being not being able to go to their hairdressing appointments and the like. But one thing that is interesting, Sam, is that these allied health, and also, you know, things that we would describe as, as beauty treatments and the lack can actually be really essential for people who need to use them to affirm their gender. What has happened in relation to those kind of other allied health supports and the like, what are people saying about their experiences of that?
Sam: Yeah, well, I guess for a bit of context, with electrolysis, I guess a lot of trans feminine people use electrolysis to reduce body hair and to aid them in their goals around transition. But also, what people might not know is that for trans masculine people that are intending to have a phalloplasty what you would usually do is get the skin from a forearm. So trans masculine people actually also have to access electrolysis in order to get basically remove all of the hair from the forearm, before that surgery takes place so that the skin is is hairless. So it is more like a typical penis type of skin. I spoke to Teddy about that: Teddy: Certainly things like electrolysis and other more intimate type interventions that people might say and when I say intimate, I mean interventions that happen very close to another person, i.e. someone leaning over your face, for instance, if that has been and will continue to be restricted.
Sam: Another big issue for people accessing gender affirming healthcare is access to speech pathology, particularly for trans feminine people.
Asiel: My name is Asiel Sanchez. I use they.them pronouns. I’m currently in Wurundjeri country in So-called Brunswick. I am a GP at Northside clinic, which is down in Fitzroy North and I work predominantly in queer healthcare, I suppose. And that covers all aspects around trans and gender affirming care as well as sexual health, HIV, Reproductive Medicine etc. It’s a fantastic, fantastic job to have. I’m also an academic and researcher at the University of Melbourne and my primary work is centring on LGBT health and medical education for future doctors to ensure that hopefully one day there’ll be an opportunity for all trans and gender diverse people to walk into any healthcare service centre and receive appropriate and affirming care. With speech pathology, the waitlist was already really long, so it was just made longer for speech pathologists specifically working in the transgender space.
Sam: One thing that a lot of people mentioned was Telehealth. Darcy what is telehealth exactly?
Darcy: Telehealth is basically getting your healthcare needs either by video call over the phone can involve sending pictures. It's obviously being used a lot in this pandemic and Medicare have allowed GP’s to bill for it.
Gemma: I've personally found it for many things to be really quite useful and easy. Like when I just need to go and pick up a script or something. It just means that I don't actually physically have to go to the doctor when I'm not feeling great. I also know that there's been times when I really just wish I could just actually physically talk to my doctor and not feel quite so alienated, which I think Sam, correct me if I'm wrong? Has sort of been what's come out of your discussions?
Sam: Yes, for some, it had some real benefits, particularly for GP appointments.
Cedar: It's funny because I generally don't think of myself as someone who likes to talk on the phone. But I was able to kind of be walking around the park while talking about these things. I found that quite good, rather than sitting in a doctor's office, like yeah, looking at this person looking at me and being like, ‘Oh my god, am I how am I moving my body? How am I like seeming in this appointment?’ Like I have to be a certain way or something. Whereas I didn't feel that on the phone. I just, like, had my information kind of in front of me. I don't know, as I said, I was walking around a park, but I like had sort of printouts of things I had like a notebook with a list of things that I wanted to talk about and just felt pretty comfortable, and I felt less comfortable, I guess, in person.
Travis: Just the other thing, being someone who works full-time, just time out of work is hard because all of those appointments always happened during work hours normally. So it made it actually a lot easier for me to manage those things because I was I have higher healthcare needs than the majority of people who I work with, so you're kind of aware that you are that person who is going to all of these appointments quite frequently and you have to kind of explain it every time you get a new manager or whatever. It's kind of good to just go well, this is only going to take an hour out of my workday rather than this is going to take two hours. Being in a regional capital city; access to healthcare was not amazing in the first place. Actually, what I found and what I saw a lot of people particularly people in the disability community saying when the lockdown came and doctors started offering remote health care and remote appointments by default that suddenly it was like well, now we can access health care that much easier than we could before. But for me for my specific mental health problems like severe depression and anxieties, leaving the house getting to an appointment physically is the challenging part. If I'm really unwell going to get to a doctor is super difficult. And because I'm privileged enough to have access to an internet connection, a home and a computer and a phone as well.
Sam: I also spoke to a bunch of people who'd moved into an online format either via zoom or just over the telephone for their mental health support, and that was much more mixed in terms of the response to that.
Travis: Attending, if I'm really unwell attending a psychologist appointment is super difficult as well. Just the fact that suddenly I didn't have to really worry about the stress of trying to leave the house.
Roz: My name is Roz Bellamy. I use they/them pronouns. I live in the northern suburbs of Melbourne. I'm a writer and an editor at Archer magazine, and I'm also doing a PhD full time so a lot of different things. I've had days pre-pandemic where I just really could almost not bring myself to drive to therapy. So it's made all of that easier. One of the days, I hadn't charged my phone and so it ran out in the middle of therapy and I was panicking and like running across the house to charge my phone. And then he emailed me and he was like, you know, we're pretty much done anyway, I'll see you in two weeks’ time. And I was like, “No, no, no, like you don't understand we need to finish!” So stuff like that has been like a real challenge for me.
Darcy W-R: My name is Darcy, I use they/them pronouns. I live in Preston right on the border with Coburg. I am a white, non-binary trans person working in volunteer management in the community sector. I am a musician and I do a lot of different needle crafts, including tattooing and knitting and embroidery. I am disabled and experience multiple kinds of disabilities on the physical and mental levels and I really love cats and I have three of them. I actually started seeing a new therapist by video and we haven't met in person yet. That's an interesting way to start seeing someone or healthcare. Again, it allows me to access therapy without having to leave the house, and that can be really important.
Simona: I did a session with my psych online, which I didn't find really that helpful. There's something about sitting in the room with a mental health practitioner where you can, I guess engage with them in a face to face sense that I find really, really useful.
Delays in accessing healthcare
Gemma: And Sam, are there some people who have just kind of completely neglected all the medical stuff altogether?
Sam: Yeah, Asiel mentioned that. Asiel: So we did see quite a number of people essentially delaying their care, sometimes to the detriment of their own mental health. And it was a really tricky kind of space to balance of, you know, making sure you're looking after yourself whilst living in a pandemic, essentially, and making sure that you're receiving the appropriate care knowing where to actually go get that.
Sam: Also, some people discussed issues accessing medications at the pharmacy.
Roz: I found chemists (because I really rely on them), to be quite challenging that even like going to one of the local chemists and the way that they'd set it up, I think later on made a lot more sense, like they had signs and they had a specific procedure to follow to distance. Whereas at the start, I walked in because there wasn't anything and I kind of got screamed out, you know ‘Get out! Go out out to the front do this!’ And so I think it's such an important part of the healthcare process, especially for people with mental illness or with quite a reliance on medication, particularly for the first month or two of the pandemic, that interaction and dynamic with the pharmacy was a pretty negative part of it. Yes. So in terms of medication, I was pretty lucky. The only thing that my partner and I couldn't access when we first needed it was asthma medication, because people went and panic what a lot of meds they were out just everywhere we went. And one thing that was kind of difficult around that time was just the way some people think pharmacies spoke to both of us when we asked for them, like we kind of got laughed at in a couple of the local ones. ‘You think we have those right now? No.’ And one of them was like incredibly condescending, and like made me fill out this long thing to go on a waiting list. And then I ended up getting called back an hour later, and they're like, ‘Oh, yeah, we got some we've got some now.’
Disccrimination in Healthcare
Sam: I think perhaps the most startling thing that came out of all of my discussions with everybody around healthcare was the impact of discrimination.
Travis: Accessing health care can always be a bit tricky if you're trans, accessing health practitioners who are sensitive to some of the nuances of providing health care for transgender people.
Teddy: During this time of COVID-19 really the most worried I've been is about trans people in hospital largely because what we know is that trans people face exceptionally high levels of discrimination and stigma within healthcare settings and in particular in hospitals. And so really, it is one of the most unsafe places For us to be that in public toilets, which is really where we want people to be washing their hands on a regular basis if they need to leave the house, so…
Gemma: Sam, at the start of the pandemic, I was quite shocked to hear you have a discussion with me about your fears that you might not be given a ventilator?
Sam: Well, yeah, absolutely. Like, if you're, you know, contemplating a system that is completely overrun, and there aren’t enough ventilators, who are they going to choose to provide life-saving support to? Are they going to choose a, you know, transgender person with a complicated mental health history? Are they going to choose their cisgender counterpart without that complicated history? You know, and that's the real concern that I think a lot of us have that, you know, when it really comes down to it, that people can pay lip service to equality, but when they really have to make difficult decisions about whose lives are more valuable, this is where stigma and discrimination comes out. And I think that my conversation with Jax was really fascinating talking about this issue in the disability space.
Jax: So my name is Jax Jackie Brown, my pronouns they and she, although I use they a lot more these days. I’m a queer wheelchair user, and I work in the LGBTIQ disability rights space, and I have done for about 10 years for a long time as a freelancer doing public speaking and workshops and speaking at conferences and stuff about that intersectionality and then now I work for Drummond Street Services in the LGBTIQ disability space. I have lived in Melbourne for about seven or eight years, and I originally come from regional New South Wales, from a little town called Lismore.
And I guess the other part of my identity that I didn't mention then was that I am a parent to toddler. So being a queer, disabled parent is really important to me, as well. One of the things we know that for people with disabilities entering the hospital system is not always a positive experience, there can be a lot of assumptions made about your life being less worthy than other peoples, and we saw that in Italy and in the UK where the numbers were a lot higher than they’ve ended up being in Australia. Where people with disabilities were asked to sign do not resuscitate orders, and in Italy were told to go home because they were saving the ventilators for younger, fitter people who needed acute care. So while we haven’t reached that scenario in Australia, and we hope the numbers don’t rise, it’s a very real fear for many people with disabilities, that our lives and our access to equitable health care will be not given the same priority as people without disabilities.
Gemma: It's really interesting hearing what Jax is saying, that these entrenched and systemic forms of discrimination are things that people with disability and LGBTIQ+ people experience all the time. But in many ways, they've been heightened by the pandemic, and also they've given us a reason to have a conversation about it. And my personal take on this is, is that really, it's just provided more clarity, and more impetus for all of us to do a little bit more about it. What do you think?
Sam: Oh, yeah, absolutely. We were talking heaps about discrimination in health care before the crisis, because of the Religious Discrimination bill. So, you know, for the transgender diverse community and for disability communities, this is not a new conversation. We've been talking about this for a long time and the proposed, government bill to make discrimination lawful in a range of circumstances on the basis of religious belief is really, really concerning.
Gemma: and Darcy, I am curious about your particular perspective on this as someone who works within hospitals and sees or is involved in the decisions about the care given to people, is this something that you worry about?
Darcy: For sure, doctors are definitely guilty of looking into a patient's psychiatric history or their disability as a reason for the presenting complaint. I think it's a real trap for getting the diagnosis wrong. So people with a disability and people with mental health histories, trans people, well, they’re all at a disadvantage right from the start when the clinician is trying to work out what the problem is. I think as far as COVID is concerned, and the potential lack of ventilators and staff to run the ventilators, I guess, going back to what usually happens is the number one question is usually ‘will this patient survive being on a ventilator?’ Because otherwise, what a horrible way to die. And I've definitely seen that happen before where families have insisted that everything be done, and it takes a really experienced clinician to be able to be quite firm and say, ‘No, that's only going to cause them harm.’ But in a situation where there's scarce resources, I think the question might become, ‘Who is most likely to survive?’ And I imagine there's an argument for not asking that question.
Sam: Yeah, and if we are saying that trans and gender diverse people are more likely to have other health considerations, like chronic health issues, poor mental health, or they might have been living in poverty for a really long time and so might not have had the same access to medical care. I mean we know that we are less healthy cohort than our cisgender counterparts.
Darcy: Yeah, absolutely. And I think the question that I worry most about would be ‘who will have the best quality of life after surviving a ventilator?’ And I don't think that's the question that the doctor can really answer. I've definitely heard it talked about. I've heard some doctors say things like, ‘Well, I think this treatments futile, because what are they going to go back to? They live at home alone. They have no family or friends. They have no job. They drink a bottle of whiskey a day…’
Sam: Yeah, and I mean, trans and gender diverse people, particularly, I think older transgender, diverse people are more likely to be socially isolated from their families of origin. And so if they're, you know, an older person with limited supports, yeah, that is really concerning if they are considering, well, ‘how many people are in this person's life?’ as a relevant factor, like, what about online connections? What about people that they speak to, you know, on the other side of the world that they might be a support for?
Darcy: I mean, I've never seen this. Stop a person from being offered treatment. But we have situation like Italy, I couldn't say that discrimination like this wouldn't play apart. I think Jax has really highlighted the fragility of the services that people with disabilities have.
Jax: Well, one of the things that people with disabilities were really asking for was personal protective equipment, to allow our support workers who come into our homes to provide personal support to us to really feel protected and for us to feel protected. As we know, there's been a national shortage of protective equipment. So that meant our support services were at risk of not continuing. I really feel and I know a lot of other people who received our support feel that if the numbers had increased, there was a very real likelihood that we would lack those supports in our lives that we will fund it to have and that we'd advocated really hard for and what that would mean was that we would then be relying on family members and partners etc. to be providing some of that support which puts additional stress on your relationships andand those dynamics for the people around you.
Sam: Teddy also mentioned the impact of discrimination on people getting tested (for COVID-19) at all.
Teddy: What we always know is that people that are most vulnerable, who are most marginalised, will be most impacted by any disease that impacts populations in societies, and COVID-19, we see in other countries that the people showing up in the data are people of colour, people who are indigenous, pensioners, who are older, or with co-morbidities, who are either homeless or extremely vulnerable, of course they are the ones who are going to have poor experiences in healthcare settings, and are most likely to have previously had poor experiences with healthcare, so are less likely to come and get tested, we see this in sexual health all the time.
Darcy: Dylan spoke about sex workers response to COVID-19…
Dylan: My name is Dylan O'Hara, my pronouns are they/them. I'm a trans masculine non-binary person from New Zealand originally now living on the unceded lands of the Kulin nations. I’m a sex worker, and I am also a committee member for Vixen Collective, which is Victoria’s sex worker only peer organization. I think that what we saw from sex workers at the start of the pandemic well before restrictions were in place or you know, guidelines were being issued, even before it had really started to make an impact in Australia earlier in the year, we saw sex workers immediately responding very proactively, you know, a lot of the kinds of intensified hygiene and cleaning practices that people have advocated for the general public and all kinds of workplaces throughout this pandemic have been things that sex workers already do anyway. I didn't have to go out and buy lots of hand sanitizer, as I always had lots as you know, these are basics for many sex workers. We have lots of different ways of maintaining hygiene and things like that. Doing harm reduction is really how I describe it.
Gemma: Sam, did you talk to people about their chronic illnesses and the crossover between that and COVID?
Sam: Yeah, I did actually, I spoke to another Darcy about that it, as it wouldn't be a trans and gender diverse podcast without having multiple people with the same name!
Darcy R-W: The ways that I am disabled and experience health conditions mean that it's harder for me to do things like leave the house or socialize more generally with the pandemic because I'm at an increased risk and also complications if I do contract anything. It's meant that I have had considerable anxiety about leaving the house because I don’t want to put myself at extreme risk, so I've been getting out less, which then means that you know, my physical health isn't as good because unless I want to move around and I'm less able to see people and less able to access all kinds of support, whether that's healthcare support or just community and social support. It's much more difficult to do that if I'm feeling less able to leave the house so and then I guess because of their levels of anxiety and stuff that goes with that. That also has an impact on my mental health, it's largely been negative.
Sam: So yeah, I think that was interesting. And a lot of people reflected on the fact that for them, many aspects of COVID-19 (I mean, not getting COVID), but the lockdown period actually improve their life on a day to day basis. So as with chronic health conditions, and anxiety and depression. I also asked people if they could think of any positive health outcomes that have come out of the pandemic so far, and Teddy, who's from ACON who we've already heard from, told me something that totally made sense, but I hadn't thought about it at all.
Teddy: One of the indicators to tell us that people are hating that advice is that we've seen a dramatic decrease in gonorrhea and chlamydia diagnosis over the last couple of months. And so we're encouraging people to be doing comprehensive sexual health screening throughout the state. So there's also maybe gives us an opportunity to dramatically decrease prevalence of some sexually transmissible infections in the community. And that's a real silver lining, I think as well.
Darcy: There's been less of everything actually the hospitals are pretty empty.
Sam: So you think the good time to get sick?
Darcy: I yeah, maybe if ever there was a good time.
Sam: So the other big issue that I tackled with a whole bunch of interviewees was of course, mental health during a pandemic.
Darcy: We just want to flag again that we’ll be discussing mental health issues including suicide, so please feel free to skip this section of the podcast if you’re not up for hearing that kind of content right now, and check back in with us in Episode 2, about policing the pandemic.
Gemma: And another quick shout out to Qlife which can be contacted around Australia on 1800 184 627 or lifeline on 13 11 14.
Sam: Pretty much everyone I spoke to discuss the impact COVID-19 has had on their mental health. Unsurprisingly, for those experiencing financial strain, their existing mental health issues were exacerbated.
Kat: My name's Kat, I’m trans non-binary, I used they/them pronouns. I live in Melbourne. I've lived in Melbourne all my life, and I am currently in the middle of moving to back to Geelong, I lived there a couple years ago, and it was really nice. So I'm happy to be going back. But I work as a UX (User Experience) designer, which is got a lot to do with the experience of websites and digital products. So that's really fun. I also talk a lot about diversity and inclusion and my own experience in that space too, which is something I'm really passionate about. I have my own mental health issues and a crisis that I was going through myself. I have a condition called CPTSD, which is like PTSD or post-traumatic stress disorder, I guess past trauma and stuff, but that kind of reached a crisis point and then a pandemic hit and then I lost my job. So it's taken a huge toll on myself and for my partner. Following losing my job, the landlord of the house that we rent let us know that he's going to be selling the house as well. So that was another big hit for us. And yeah, everything's been a lot.
Darcy: Simona discussed trying to get an appointment with a mental health practitioner….
Simona: There’s been a huge demand on their services, so getting an appointment hasn’t really been that easy, and also I was so overwhelmed by what COVID might be and what it might do, that I let that fall away a little bit. And also the feelings of isolation, for someone that lives alone. I wasn’t able to go out to the clubs, or engage in exercise in a social capacity, which is one of the strategies I might have otherwise used to deal with my isolation. So there have been a lot of nights where I’ve been sitting at home alone with my thoughts.
Sandy: I’m Sandy O’Sullivan, I’m a non-binary person, I use they/them pronouns and I’m an associate professor in Creative Industries at the University of the Sunshine Coast, sort of between Brisbane and the Sunshine Coast. Being my age (54), and having a few chronic health conditions meant that I actually didn't know (what respiratory illness) I had at the beginning and I really thought I was going to die. And I realized I didn't have an up to date Will. I realized there were a lot of things that I hadn't said. My only ever nightmare about my very late in life understanding of my gender, was that I was worried about my family having a funeral for me and not knowing about my gender, and them not talking about it. It was a weird thing to be so focused on. Like, it's a weird thing now that I reflect on it, wasn't a weird thing (at the time), people have whatever feelings they're having, but I guess on reflection, I think I probably should have been more worried about dying. So there was that as well. So that all of that happened, everything just started to really compound a bit after that, and I tried to kill myself. That's never happened to me before in my life, and I've never had anything like that happen. And I think there were two things that were really surprising for me about it. One is probably pretty crucial. I reached out to people, and it was actually what other people said that changed that direction for me. It wasn’t (gender) affirming or anything like that. It wasn't any of that. It really was just having a conversation. And it was what I needed at the time. The other thing that happened was that I came to realize something I thought I knew a lot in a very abstract way about suicide. And this is terrible, but I probably had value judgments on (suicidality) sometimes. I didn't even realize that until I went through it until I understood that. I wasn't going to leave a note. I mean, when I was a teenager, I would have said a whole lot of ‘Oh my God, I'm gonna kill myself!’ but I didn't mean it. You know, it was an extreme position that sometimes people have at different times in their life, but for me it was when I was a teenager. And I always thought I'm going to live a really long note and I'm going to tell people how terrible they would be or how, you know, it was like this absolute. I didn't realize that. I didn't know why people didn't leave note I do now, I know that I didn't want anyone that I cared about to know what I was thinking. It was a really powerful moment. But it was, also I can't even believe that I'm saying this, but about an hour later, I sat down and I wrote an article about which, which is like, a completely ridiculous academic thing to do! But it was also cathartic. I mean, like I always say to people, ‘don't write articles that are cathartic!’ But I needed to this was not about whether it was ever going to go anywhere I was ever going to talk about it or was the need to write it out. And to really understand it, I have, you know, in the Wiradjuri language there is a saying from my community, which is (Wiradjuri proverb). It means roughly translated to live well in a world that's worth living in. So it's this idea of doing good in the world, but also living well. And you know, this isn't about responsibility to people. This isn't about blaming people who make these decisions over their life. But I realized, for me, it did matter did matter that I am doing important things, but also that I'm living well, I'm doing things that are important to other people that may as well as that I'm living well think the I'm living well got out of balance, when I felt like I wasn't doing enough for other people. And that it's a really tricky thing. But I think this is all incredibly round in the way that all of our lives are going to be around that idea of who we are and how we understand who we are. And it's definitely about how I understand who I am.
Joe: My name is Joe Ball, my pronouns are they and them, I identify as a transgender non binary person. That's how I identify as I'm recording this now, but that may change over time and I may transition and take on different pronouns. I grew up in Brisbane and spent the first 21 years of my life in Brisbane and then I moved to Sydney for 10 years. And now I live in Princes Hill in Victoria. I'm the CEO of switchboard Victoria, which is a leading LGBTIQA+ community controlled mental health, Family Violence Prevention, suicide prevention, supporting elders organization. Around mental health and COVID-19, a lot of the issues regarding COVID-19 I think is best understood as exacerbating mental health issues that already existed in our community prior to COVID-19. We had high rates of suicide, high rates of poor mental health, particularly in anxiety and depression. And so those things already existed. And I really believe those things were brought on by systematic discrimination over people's lifetime and current and ongoing oppression and discrimination. So I think those things already exist. And prior just before COVID-19 in Australia, we also had a religious discrimination debate. So there was a lot going on where a lot of people already feeling attacked and concerned about the future and the future of healthcare and service provision in Australia and whether there was going to be this (new) religious discrimination legislation that would allow people to be discriminated against when they're accessing care and support. So I think there was a lot of anxiety and concerns that were driving poor mental health prior to COVID-19. So I think that's really important. At Switchboard, you know, we were really at the coalface of responding to how people were feeling about the religious discrimination bill. So I feel like there was already a bit of a crisis in our community, and then we went into COVID-19. And I think for any kind of group that was experiencing discrimination and oppression prior to this, all those things have been exacerbated, you know, unemployment and poor mental health. You know, I don't think that COVID-19 has brought a lot of relief. It's only made things worse for those who are already discriminated against. However, there are some things that COVID-19 has brought about that I think have been really interesting about people's mental health, and one of them is the job seeker allowance increase. Prior to COVID-19, most people understand that there was no such thing as a liveable income for people who are unemployed and looking for employment. And through Job Seeker, we saw this huge increase in that amount of money and so much of you know, the issues that we see with the people that we support in Switchboard you know, its poverty driven, what are the concerns that people have? Its discrimination and oppression. And its poverty, just a big reoccurring theme. So when we saw Job Seeker actually go up, what we did hear was a lot of people telling us about how suddenly they could afford to buy food that they really needed that they couldn't buy before. So I think there was some really interesting things about COVID-19, where business as usual was completely disrupted. And it showed us that that we don't want to go back to the way that things were. And I think that's really interesting for queer people is COVID-19 is that like things were really ordinary and pretty shit for most queer people in Australia prior to COVID-19. And that was obviously more exacerbated at the intersections of where people with disability queer people are Aboriginal and Torres Strait Islander and queer people of colour. And so I think COVID-19 was a disruption to business as usual. And it's really important that we, you know, don't romanticize the pre COVID-19 moment and just go, how quickly we can get back to the way things were because the way things were was nothing to be celebrated.
Sam: Teddy mentioned seeing similar things in NSW.
Teddy: We've seen an incredible increase in experiences of depression and hopelessness. We've seen financial strain, we've seen self-harm increasing…
Sam: People also talked about the impact of social media during the pandemic on their mental health.
Lore: Mental health wise, I don't have like a clean label, I suppose I have, as my therapist says “My anxiety runs very hot”, whatever that means. And I have a sensory overload thing, similar to like the autistic community with finding sounds especially and harsh lighting, fluorescent lighting, I can't tolerate with without special glasses and things like that. It's been a harder balance to not fall into the Facebook black hole and not become hyper vigilant about checking statistics every day on, you know, various websites about the pandemic and things like that I really had to identify what was being helpful and what was spiralling anxiety and things out of control and find a balance there, I ended up actually making a daily kind of schedule using an online app thing that turns whatever you want on your to do list or habits into basically a video game. And so that's been really helpful of establishing a structure. So I ensure that I have specific ‘I'm only going to do this for this amount of time’ which doesn't always happen, but it's still it helps me to rein myself in.
Sam: I have to say I found hearing this stuff really hard, and so I was really keen to hear from people about what they’d found useful to get through this tough stuff.
Sandy: What always made it better was connecting with people, and being able to hear the wonders and joy and stories of other people. You know, it's one of the great things about the work that I do. But the life I lead to great as I get to hear amazing people who have always more interesting stories than me, everyone's story is more interesting than your own right? I love that. I realized that there is a joy in that and a responsibility to it as well at the same time. So I think all of that was pandemic shaped for me, when I finally talked to my doctor, which wasn't very long after that he was one because he always is like to have a GP who gets it around gender immediately hitting the ground running and now knows as much as I do that I know is rare and random. He has been my doctor for a long time. And to then be able to talk to him about this was powerful. And, and obviously it was on the phone, you know, everybody was doing phone consultations, and it was still was still powerful.
Sam: A big theme in my discussions with a lot of different people across Australia was about the resilience of the trans and gender diverse community.
Teddy: On the flip side, though, we've also seen people being and reporting an incredible level of resilience, which is very usual for trans people. We have very high levels of resilience, very high levels of pain tolerance, because many of us move through the world are really in a heightened level of vulnerability and readiness. So even though we've seen people doing it real tough, we've also seen more people connecting online. Finding communities engaging in community groups in ways that they've perhaps never done before. And so that's really important and really powerful and important to remember that even if good chunk of our communities are having a really tough time, a good chunk of our communities are really thriving as well and isn't necessarily all doom and gloom, but we really must focus on ensuring that all trans people, people in our communities are safe and secure and feeling honoured and cherished and affirmed across all of their lives.
Sam: Some people also talked about the lockdown being a really good time to focus on self-care.
Johnny: We need to really prioritize self-care, we need to really prioritize our lives before what we do. And I learned that the hard way. I went into a relapse because under the weight of everything this year that has happened to me so far. And what I've seen happen myself collapse under the weight of that and I am not the only one. I'm confident that I'm not the only one…
Sam: And over the next three weeks we'll be talking heaps more about the different strategies people have used to overcome loneliness and poor mental health, from connecting with new people online and having really hilarious interesting first-time hook-ups online to getting pets, kittens and puppies during lockdown or rescuing, older pets and getting involved in social movements to confront racism. So, rest assured, we'll definitely continue to talk about that all throughout this show.
Gemma: This last few months has been a time of extremes and you know, some of the things that we've talked about in today's show really illustrate that you know, from people who feel more able to focus on their creativity who feel more able to freely just not go out if they don't want to go out and embrace their introverted side, through right through to people who have really struggled with the isolation and loneliness and the very different impact on people's mental health. And I'm really looking forward to continuing to pick up on those themes in relation to all kinds of different things in the next couple of episodes.
Sam: And I should say, it's a really interesting time to be recording a podcast about healthcare because things are changing so much. I mean, when I was recording these interviews, it really felt like we were coming out of the pandemic, and that seems we're kind of getting better. I mean, and you can hear that in, in many of the interviews that I've recorded, you know, most of which were recorded in in early June, where it's now you know, the three of us are living in Victoria, which is currently the most maligned state in the country. Nobody wants Victorians into their state or territory at the moment! So it is a constantly changing scenario. So yeah, we bear in mind that a lot of the things that were saying were recorded, you know, at a particular time. Everything is changing day to day.
Darcy: I did travel across the bridge into New South Wales yesterday morning and I felt really sneaky yeah.
Gemma: Get those cheeky NSW people. Well, just one crossing at a time.
Sam: Did you have official business over there or we just just trying to look?
Darcy: I could only see a TAB on the other side, I think their gambling laws are different there.
Sam: Well, I hope you were wearing your mask in your protective layer if you if you put a better on. Gemma: Thanks very much for being with us for our first episode of Transdemic. Thanks to Simona Castricum who provided us with her amazing track “The Half Light” from her upcoming album Panic/Desire to use on the show. See you next week.