WEBINAR: Queering Health Interventions from Ethics to Application
PRESENTER: Max Jacob Thomas
DATE: 28 February 2023
Professor Rachel Skinner [00:00:06] Good afternoon, everybody. Thanks for joining the first Well-Being, Health & Youth Webinar series for 2023. I'm Rachel Skinner and I'm the Deputy Director of Well-Being, Health & Youth, which is na NHMRC Centre of Research Excellence in Adolescent Health. So just to start, I would like to acknowledge the traditional owners of country throughout Australia and recognise their continuing connection to land, waters and culture and that we pay our respects to their elders past, present and emerging.
Professor Rachel Skinner [00:00:52] WH&Y also acknowledges the funding support of the NHMRC and the contributions that have been made over a long period of time now by our research partners in universities across Australia.
Professor Rachel Skinner [00:01:06] First up, I have some sad news. We learned earlier this year in January that Fiona Brooks passed away and she leaves a really important research legacy from her entire career, but also that she was a WH&Y Chief Investigator and made significant contributions to our Centre of Research Excellence in its establishment and its ongoing success. So, yes, a sad note to begin with.
Professor Rachel Skinner [00:01:41] I'm going to now move on to a very positive note. Congratulations are in order for Professor Kate Steinbeck, the WH&Y Director. Kate was made a Member of the Order of Australia for her significant service to adolescent medicine through a range of roles over her stellar career. One of which, of course, is establishing the first Centre of Research Excellence in Adolescent Health. A very important contribution that she's made and that we plan to make continue for as long as we can.
Professor Rachel Skinner [00:02:26] Just a little bit of housekeeping to remind people and those who haven't been on this seminar series before to put questions in the chat at the bottom right hand corner. Throughout the seminar, as questions come up for you just pop them in and we will highlight them and will answer them at the end of the presentation. So that's down on the bottom right hand corner. And then the questions will appear at the top there when it's time for questions.
Professor Rachel Skinner [00:03:02] I'd like to introduce Max Jacob Thomas. Jacob is an internationally recognised human rights advocate and multi-published researcher specialising in LGBTQIA+ youth. Their research has a particular focus on trans and gender diverse youth and building queer mental health interventions through community co-design. Jacob is particularly passionate about queering curricula and ensuring health practitioners are equipped with the necessary skills to work with LGBTQIA+ people. In their spare time, they're a biker, clothing designer and drag queen. So I hope we hear a little bit about that. But I also wanted to say that it's really wonderful to have Jacob speak to us all now during World Pride. It's been really wonderful that Sydney is celebrating World Pride for the first time and that WH&Y can make a contribution to that in terms of our research presentations. So thank you, Jacob. You can take it away.
Jacob Thomas [00:04:18] Awesome. Thank you so much. My name is Jacob, I will talk even more about myself as time goes on, but for the time being will also talk about why you're all here, which is looking at some roadblocks and solutions that I've been able to identify through some of my research. I am a millennial, so that's why we always use memes. I think this is probably one of the funniest memes that's ever come out, especially as a trans person. I love this and just a really important reminder that for trans folk at the moment, it's a really tough time. It's kind of always been a tough time for us. But in particular at the moment, the vulnerabilities that we're facing are quite heightened. So one of the really simple things that you can do when someone tells you who they are, you just take that on board, especially if it's a name change. So there we go.
Jacob Thomas[00:05:10] I am coming to you all today from the unceded lands of the peoples of the Kulin nations and want to pay my respects to elders, past, present and emerging as well, and extend that out to queer Mob and to queer First Peoples of these unceded lands. Queerness is not a new concept. It might be what we call it now, but it's not necessarily anything new. It's not a white colonial piece, it's not. Colonisation actually repressed a lot of queer history on these lands. And so I just want to make sure that as we're acknowledging peoples and country, that we also acknowledge the really rich, queer history that has been part of this as well. And also to note that sovereignty was never ceded on these lands and it always was and always will be Aboriginal land.
Jacob Thomas [00:06:02] Before we get into it, I just want to again come back to this really unique point of where we are in the world. I was talking with a colleague the other day and I was just like, it's wild that it's only Feb because I feel like my body is in September at the moment. And she was like, Oh my goodness, me too. And the more people I've spoken to, I think we're all kind of feeling generally quite exhausted at the moment, hopefully not numb. But I know that I'm definitely feeling a bit worse for wear this early into the new year. And so I just want to acknowledge this point, too, that the world is in a constant state of flux at the moment. The world's in quite a bit of pain. And that's okay for us to recognise and to sit in. I don't want us to deny the realities of the world around us are impacting us as well. So, I hope we're all looking after ourselves as best we can.
Jacob Thomas [00:06:58] That's me meeting the late Her Majesty the Queen. Some of this hasn't been updated, which I completely forgot, but this is just a quick snapshot of who I am and what I do. That's also me in drag down the bottom that was for a really wonderful Melbourne Fringe show a few years back. And when people try to ask me, how would you describe yourself? It's just so like, well, kind of queer, sitting in these very formalised, quite difficult to navigate, quite challenging spaces such as working in a space like the Commonwealth, but then also being able to freely express within the arts and then bring that into academia and research as well. For me, I love mess. I think mess is wonderful and glorious and I like to stick to mess as much as possible. Not always great for publishing, but we'll work on that and that's fine because I do qual. So you're welcome. This is also me with Harry and Meghan, or Meghan and Harry, I should say, if anyone is wondering. Yes, that is me in the docu series on Netflix.+ That's me in the jacket on the left there. They're quite lovely. But the reason I bring this up is because I had the really wonderful opportunity in 2018 to become quite, I guess, impactful with the two of these quite legendary legends in getting them to recognise LGBTQ+ rights across the Commonwealth, which was huge. They were the first people to do so openly as members of the British family and British Empire. So, you know, it's really interesting to see what impact can be made and where and at what time.
Jacob Thomas [00:08:52] Now, before we go into the big part of my role here, I just want to let you know that there's going to be some discussions of violence today, discrimination, persecution, conversations around suicide, mental ill health and death. There are also going to be some swear words in case we're a little bit sensitive to those as well. We obviously want to be inclusive from start to finish, but they're used within the context of some really beautiful historical pieces of writing during the peak of the AIDS epidemic.
Jacob Thomas [00:09:23] I always like to start off with understanding power and understanding how power is seen within a queer perspective. And one of the ways in which I find it best articulated without me doing it is from this really beautiful piece of writing called An Army of Lovers cannot Lose. This was written by a group of anonymous queers, I believe in 1992, I’ll give you time to read this, it is very easily Googleable. I'm assuming that's a word. If not, it is now. You're welcome. And it's around recognising that for queer people to be able to ascertain power, for us to be able to take it back or to be able to create it for ourselves it does and can look quite different to, I guess, what a general perspective of power looks like. Power often times ,and this is where my sociology undergrad is really showing, can very much look at this point around trying to emulate or to take and replicate the power that oppresses us or that harms us. But this is a really, really important perspective to queer perspectives for queer populations as well. And I'm using queer in that big, beautiful umbrella that we all get to belong to, recognising that it's not about executive directors, it's not about profit margins, it's not patriotism, it's not about assimilation. It's about just being who we are. And I bring this up because it's really quite challenging when we're trying to see queer populations, in that we don't fit neatly into boxes, especially when it comes to research. And that can be quite difficult because it then prevents a lot of again, messy, interesting pieces and perspectives from making their way into the practice base or the curriculum or the training or the methodologies that we're trying to then implement and to get published out there.
Jacob Thomas [00:11:31] This is also another really brilliant piece of writing. It's called I Want a Dyke for President. I actually read this last week. Monash University, where I'm based, has just celebrated its first Pride march on campus last week at our Clayton campus, which was quite beautiful. And I got to read this out into a crowd of a thousand staff, students and members to recognise again that this is from 1992, that a lot of things have not necessarily changed. Things have changed to a certain degree, we've got marriage equality, some adoption laws have changed, gay panic defenses have finally been wiped out. We got some state apologies happening, and that's all good and everything, but there's still a lot of power that prevents queer people from living a really true and healthy and happy life that is free of restriction. And this primarily comes down to I guess a lot of what we then try and research. I would love to do more research on happiness. I'd love to do a lot more research on connectedness. I'd love to do a lot more on the good stuff, if you will, within queer populations, especially our young queer people and, actually not especially queer young people just across the age ranges, because loneliness isn't something that just sits within a particular age demographic, right? But, you know, in doing that, it's quite hard because there's a lot of stuff that we still need to understand. We need to understand that things like suppression and conversion therapies are still legal in some states and territories in Australia. We need to recognise that adoption rights are not equal across the board. We need to recognise that affirmation processes for trans and gender diverse folks is not consistent between states, and that's just in Australia. And then once we look beyond our borders and once we kind of stop our navel gazing a little bit as well, we then start to see that a lot of stuff is still quite oppressive and quite awful for our queer folks. It's still illegal in several countries, and when I say several, I don't mean a handful. I mean closer to 50. We still have death penalties in a number of countries, and I know it can be comfortable and kind of convenient to say, well, that's them, it's not us, and I'll create that division, but the whole point of queer and the whole point of queering things is to recognise that regardless, you're still interconnected. You are a global creature. We move around. I'm about to travel for the first time in a couple of years for work, and I again have that hesitation of how easily can I move around again. You know, one of the things that I have to remember is, how do I stealth, how do I move through things? Because we aren't in positions to make laws that protect us. We have to request and we have to ask and we have to lobby as well. And that prevents not just us living great lives, but also the research that then informs and tells our stories, then moves on from there too.
Jacob Thomas [00:14:41] I’m going to just quickly talk about violence, and when I say violence, I mean it in a theoretical prismatic sort of way, the way in which we see things. Looking at systemic violence or invisible oppressive circumstances, not getting employed for things and bringing that into ourselves. And so saying, is it because I'm queer? Is that what the reason is? But then we also have real, honest to goodness physical violence which needs to be recognised as well. We are in a very, very dangerous time as queer people recognising the things that are going on around us. We just need to turn to the United States, to the United Kingdom to see comparable countries and to see what's actually happening there within law, where we are now turning on drag queens, we're now turning on trans kids as though they're going to end the world around us and this is the hard stuff that research won't necessarily fix quickly. We should still research and we should absolutely still look into it. We should aim to understand it and have it inform what we do. But it is very, very intense at the moment and really changes and challenges the ways in which we try and articulate the complexity, the sheer amount of ways in which we are experiencing forms of violence. At the moment, they're not easy, they're very, very complex.
Jacob Thomas [00:16:34] This is a great piece. If you don't know, it's Panti Bliss, I adore Panti. I think she's brilliant, an Irish drag queen, also a person living with HIV. Very, very open and proud of that as well. So we love you, Panti. And she talks about this really important point - why queer people are considered gross. Like, what is it about us that people just really, really detest? And we've got obviously the really uncomfortable bits that are in there, I don't want to repeat their words, just go on Twitter, I'm sure. I'm sure you'll find it on the wrong side of TikTok. But Panti what really brings home, the important point, is that really, they just hate sex, at the end of the day, they hate queer sex. They hate gay male sex in particular. And I need to point this out. 1533 is the year that the UK court system, as it was back then, decreed that buggery, unnatural offenses, was to be made illegal. And that carried through colonisation, and that still carries through at the moment. And that was very present in our laws across Australia, across all states and territories. And what happens with that is that we get reduced down to sex acts, we get reduced down to just buggering, if you will, and just doing anal and nothing else. We have no, as Panti puts it, no aspirations, no hopes, no ambitions, no feeling like everyone else, we're just walking sex acts. And I think that kind of gets missed a lot of the time, this historical part of why this research is really difficult? You know, why we are road blocked a lot of the time in trying to find really new, novel, interesting ways to think about queer populations and what that's going to look like, especially when it comes to young people. I know that there's a lot of tension around young adults and teens engaging in sexual intercourse and engaging in healthy relationships. Very important stuff. Yes, we need to be talking about that. But I'm still waiting for more research to be done and to influence queer curriculum, especially within sex education, within healthy relationships, because it's very straight. We're not seen as people, we're getting better, but again, better takes a long time. We're not even necessarily seeing enough around what a healthy relationship looks like for queer folks. We're not queering what relationships look like. We're not looking at polyamorous relationships and not looking at triads. Whether people identify as queer or not, we're not looking at those experiences. And so we miss people out all the time. We can't even get in our census, right? So we don't even have available data to come back to, to inform our practice and what we want to look at.
Jacob Thomas [00:19:45] So taking all of that into account, I'm just going to give you a quick overview of what I like to think is a very brief history of queer research and where we've got to. Now, what's going on is, again, I'm not going to read all of this out, but when we look at, say, funding, right, when we look at funded projects, your queer researchers, we remain quite disparate. Like we're getting a lot better at it. And again, I think that's great, but we have to keep hunting each other out. There's a lot of us who are brilliant at what we do, but again, it's quite few and far between sometimes. And we get tied into these three- to four- year project grants and nothing else really happens after that. Yes, we can identify things. Yes, we can research things, but then we don't have opportunities to apply them or we're really struggling. My favourite is to have sufficient data to then say, okay, that's now going to inform how we practice or into how we teach in the curriculum, for example. That's something I'm looking into at the moment. And there's just a few examples of things that require longer term funding. And I know we're not alone in this. I know this is not a unique thing, but I bring it up so that we can recognise that it's consistent across the board and it's a bit of a long lasting problem.
Jacob Thomas [00:21:12] It's also then important to look at, and I love this by Logie et al and Owen-Smith et al, both of these groups were looking at what queer people's experiences when they are participants in research, what's going on with that? And unfortunately the findings of these particular studies was that queer folks generally feel as though and express that actually the research isn't about them, they're just convenient participants and that's it. I've definitely felt like that when I've been a participant prior to becoming a researcher. We're posing questions that aren't actually relevant, we're asking things that don't actually meet a need at all, we haven't actually sussed out what the situation is, and that has over time created a problem where you have all these really brilliant activist organisations, have these beautiful community groups who know themselves and their communities and the people they represent so much better than we do. And they try and go for things like local grants. They try and go for state awards or what have you. But then funders will want datasets written expressed in a very particular way, and they don't have that. So then they have to come to us to help build those. And it creates this codependency model as well. And again, something very important we need to consider. It also means that we're wasting a lot of time as community coming into university spaces, coming into research spaces, because I know I'm sort of moving in and out of activists vs academics in research, but this is where I sit. Love being in the messy, wibbly wobbly, but it is quite frustrating sometimes saying, you know, we've got so much work to do on the ground right now. And yeah, I appreciate that. Dr. Such and Such wants to meet with us and interview us and that's really, really cool and everything. But if I go and do that, or if I go and do that interview where I sit on a panel or I sit in this intervention mapping program or a focus group or what have you, that's taking away time from over here. And if I'm not here, then there might not be anyone else to do that. So this is a waste of my time right now, especially if you don't do anything with it. And that's been unfortunately a significant part of our history within research.
Jacob Thomas [00:23:40] Hopefully, not surprising to too many of us, but surprisingly enough to me when I read this, you know, those moments where you think, it's probably a little bit of gaslighting, but also when we think about discrimination, we sit with it and just sort of go, is it perceived discrimination or is it known discrimination? Am I just responding to this because I'm so used to the world around me and how it treats me? Or is this really logically known and set in stone, and yes, they are just discriminating. I felt that way a lot of the time and I've spoken to many colleagues about this as well. And so you sort of find this paper by Fisher and Mustanski regarding ethics, a lot of queer research is considered greater risk compared to the same population, same demographics. So the example is we've go young people, we want to understand, say, a particular mental health intervention. Everyone in the population that we want to look at has to have a diagnosis. They're voluntarily coming forward. We get permissions. We do all these sorts of things. Where it's just the general population and general tends to imply straight and cisgender because of course it does. And then you have another one that is very explicitly a queer population or sub populations. You get both of those side by side. The queer one will always be considered greater risk, nearly always. We're getting a lot better at this, and that's really exciting to see because we're getting queer folks on ethics panels and on ethics committees to start challenging this and start informing this because the misapplication of greater than minimal risk is really preventing a lot of research from even being done or approved in the first place. So it's not that we're not just getting funded down the track, we're also not even getting approved down here to do something that could be quite risk free at the end, not all research is risk, but some of it is quite minimal and very minimal risk is being denied because of internalised homophobia because of institutional biases and discriminatory practices.
Jacob Thomas [00:26:05] This is Associate Professor Ada Cheung, she's based at the University of Melbourne, and she's just a brilliant human. I have so much time for Ada, I think she's just stellar, and everyone she works with. And she did this really great interview last year in the The Sydney Morning Herald where she said "As an endocrinologist who treats trans people and a clinician and scientist, I'm passionate about research to improve health to guide policy and enable evidence-based decisions. Sometimes, as is the case of transgender health, which has long been stigmatised, there is not a lot of evidence, but plenty of assumptions. When I saw this, I went oh my goodness, Ada has just put this mess and chaos that I've been trying to understand into such a simple phrase. And she's right. And we can see this all the time. We get into this vicious cycle a lot of the time. And I remember when I was working in health advocacy, I would work with, I won't name anyone here, but my colleagues, fellow activists and I, we're trying to work with some quite senior groups to start working on queer health stuff, and the big question was, well, where's the data? Where's the evidence? And we went, oh, well, you know, we can kind of imply it from here. It's here, we've got this one. It's kind of a bit outdated, but we've got this one and that's kind of it. We've got this one from 2012 and then we've got this one from 1993, that's kind of what we’ve got. And they were just like, wow, it's kind of insufficient evidence. Yes, we agree, but we can't find the evidence. It's not there. And we also can't get the projects up to then develop more evidence because ethics isn't getting approved or we have a dependency on researchers because we're activists or we don't have money to be able to pay people to do that, or queer research isn't a hot topic at the moment, so therefore we're not going to fund it or look at it. And it creates this really messy cycle, no evidence is captured for the community or communities that we're looking at, which then means that there's no informed frameworks of how to capture data for community. The number of conversations, the number and I'm happy to keep having them, but the number of conversations that I have with people when it comes to capturing gender on a survey, if I see male, female, other one more time on a survey, especially about queer folks, I will very, very politely write an email to let you know that I have inputs and if you don't know, ask us, please. By all means, ask us, ask me. I'm down with that pay me, but we can ask. So it's not informing our methodologies and it's not informing our practice well to actually capture correct data or useful data or meaningful data. And so we have these inaccurate scientific approaches, which then just means everything's a little bit like I don't know how to deal with the queers, where do they go. And so we try and smash them in. And then it becomes quite convenient because instead of saying right here are all of these different sub-populations, here are all these different subgroups. I know it's a lot of data. I get that but it's always going to make much better research. Trust me with that. Because otherwise what happens is we get crammed into these very convenient boxes, and then when you don't fit into that box, you get disregarded, your data, your story, your narrative, your input as a queer person gets pushed to the side and it's not measured. And that great rule of if you can't measure it then it doesn't exist. That's it. And then we have all this data and then we try and inform these guidelines and these policy banks and the evidence base in my case, medicine, and nothing happens. And then we keep going around and around and around.
Jacob Thomas [00:30:25] I won't go too in-depth with these ones at the moment. So, ethics isn't happening or happening rarely, we're not getting enough funding to continue our work and to do some long term work. We then have these drop-in pieces that are kind of happening, some quick interventions, but nothing significant or long term enough. We then have dependency models where we're not really changing things because our methodologies are off, our results are off, and our research isn't actually capturing everything. And then that leads to this, where we have just as one example because the division is wide, but our mental health disparities, especially for our queer youth, are appallingly high. And you just need to read 'Writing themselves in 4' and kudos to ARCSHS [Australian Research Centre in Sex, Health and Society] and everyone involved in that research, it is so important that we have that research because one, it highlights how bad it is and it is very bad, but also it points out that we know mental health systems are appalling, we know they are, they are nowhere near where they need to be, and so many of us are working on that, and I love that we're trying to work on that. But when you look at queer research, this is something that I found when I was doing my PhD , which I didn't finish, but one of the things that I found quite interesting is that there are very few primary health interventions that are established for queer youth. But that's all we're kind of focusing on at the moment, we are so behind on queer health interventions, we are so far behind that we're still on interventions as treatment only. And that's kind of it, and it is wild to see how far behind we are. I don't think there's a hard number behind this, and if there is, I've just missed it, by all means, please feel free to get in touch. The disparity between where general population health is and queer health is, especially queer youth health, is just nowhere. I think someone said it was like 20 years behind. I don't know if that's necessarily correct, but, you know, wild to sort of think about.
Jacob Thomas [00:33:07] I can see that there's some questions in there and I'll answer them at the end. it's not just mental health, it's across the board. You know, we have higher rates of homelessness. We have a higher dependency on community based organisations and volunteer organisations like Parents of Gender-Diverse Children who I absolutely adore. And then we're not even getting to older populations. We're not even going to other age demographics. We're stuck down here in youth, which is, again, very, very important. We need to look out for our young people so they can become confident and safe and secure adults. But what happens when they become adults? We're not even getting there yet. And I just want to point out that schools at the moment, schools are just such terrifying spaces for young queers. I won't go through all of the details here, but I just point to one from Hill et al research back in 2020 that the rates of violence in Australian schools are increasing year on year, year on year. Obviously, that would have been affected by COVID, we don't necessarily know. But again, violence isn't just that physical stuff. It’s not just punching and kicking, it's also cyber violence, it's also the high rates of bullying, it is ostracisation, it is isolation, it is policies, it is not having accessible bathroom spaces or change rooms or allowing trans girls to play sport or trans boys or just trans folks in general to play sports. And what you see there in Ullman et al in 2021 is that in a survey that they did, I'm fairly sure it was a survey, don’t quote me on that, they found that more than 90% of Australian queer students experienced some form of discrimination while at school in that particular year. That absolutely breaks my heart, because by the time I got out of high school, I'm 33, I thought we'd be better. I thought we'd be much, much better. And it's still horrific, it is still utterly, utterly horrific at the moment.
Jacob Thomas [00:35:27] So let's talk about how we can try and fix it, if you will, because this one presentation will magically gloss over everything and we'll have no more problems and it'll be great. But one of the key things is, we need to go all the way back to really questioning when we are doing queer research, which queers are we researching? I know some colleagues of mine are on this presentation at the moment and we've gone over this significantly, is that when we're looking at queer populations, queer youth, or we're looking at pregnant folks and certain periods of, say, preconception, pregnancy and postpartum periods, we need to really come in and just be so like, are we just looking at middle class, white queer people who have a significant status of relative privilege? And if we are, why are we not talking about those privileges? Where are the studies that focus on black folk, on First Nations folks that focus on various experiences of people of colour, looking at migrants, looking at people with complex disabilities, looking at low income folks, where's that? Where's the research that's looking at that? Because most of the time we're not looking at that. It's kind of considered in some disciplines and not so much in others, but, you know, unnecessary information. It doesn't matter. It massively matters. You know, if we're looking at something like health equity, finances always have an impact on that. I don't just experience hard times going to the doctor because I'm trans, but we need to recognise that trans and gender diverse folk in Australia are some of the most underemployed and unemployed as well. And if we're not taking class into account and financial circumstance, we're missing a really big piece of that puzzle. I'm very middle class, I'm doing this, I'm highly educated, I am so far personally beyond, I'm such an outlier and I keep meaning to tell colleagues that, that I'm not the gauge of the trans experience, because I'm not. But we need to take these complexities, these true intersections into account.
Jacob Thomas [00:38:09] We also need to, and this is a tough one. If you haven't heard of trans broken arm syndrome before, welcome to trans broken arm syndrome. This is how much of a nerd I am and nerds and geeks unite. We want to go back and look at research that's done on trans folks and see if trans broken-arm syndrome was actually something that was quite present in that research and in that data, because if you don't understand trans broken arm syndrome, obviously it's not association equals causality, but people do. If I was a young person and I was in the tree with my genders and I fell out of the tree and fell down and broke my arm, and a friend of mine who is cisgender identifies with the gender assigned to them at birth, also fell out of a tree, maybe the same tree,oh who knows, because we'll try and control for variability, and also fell and also broke their arm. We both go to the emergency room. The cis person, people will look at them just go, Oh, you broke your arm, okay? You broke your arm, you fell out of the tree, that's fine, let's get you cast up, let's fix that and set your bone. If I rocked up as a gender diverse person, I would get asked, did I throw myself out of the tree because I'm trans? Am I faking it because I want access to something else? Am I unwell or am I sad, or what have you because of my gender? I'm not on hormone replacement therapy, but we have had medical professionals many times ask, essentially, did you break your arm because of your hormones? I just need people to really unpack that and sit with it for a second because you would not ask that of a cis person. We might ask cis women because of misogyny, but that's a whole other cross point of just TERFS and trans folk should be able to work together because the issues are the same. But again we're getting denied good equal care because of these expectations and perceptions.
Jacob Thomas [00:40:50] I think we've done enough statistics so I'm just going to flick through these ever so quickly. Again read Writing themselves in 4, it's a brilliant piece of research. But I will just come to this one. One off the key things that the team found was that 64.3% of participant who accessed an LGBTQ+ specific service regarding suicide or self-harm, reported that doing so had made the situation better. And obviously there's a lot more to that, but we desperately need in community, in health practice, and in research, in universities and in centres, dedicated queer spaces for us to be able to do this, we desperately need that because we need that camaraderie. We need that space where we are just understood where we don't have to explain ourselves. We don't have to come out all the time either. We're able to just be and explain the concept, not explain ourselves and try and justify ourselves, if that makes sense. And, it would make a world of difference, I think.
Jacob Thomas [00:42:10] I'll wrap up very shortly. But one of the things I'd like you to ask yourself after today, because I don't think we'll be able to answer it in the time left, is being able to think about, and I've posed it as an overly simple question for a reason, but asking ourselves, what is the root cause of this disparity? Why does this exist? Why is this gap so big? Why is it so significant? Why do we struggle to get good research done, and then applied elsewhere. Why do we struggle with this so much? And what is the cause of that. Because I know a couple of you have been asking what's the advice? What do we do with this? I've got some answers for you, so hopefully this is useful. These are some questions to ask yourself, if you want to take a picture or screen, grab. These are the things I think we all need to be asking. These are things that I ask myself when I'm researching. I used to work in international development quite a bit, and these were the questions that we were told that we should ask ourselves. How well do I know community? Am I curious about the community? Am I just over here on the outside looking in or am I on the inside looking out? Am I being a tourist? Being a tourist is not a bad thing, we're not going to sit in that harsh morality of good v bad. A personal example, we had our block party on Smith Street here in Melbourne a few weeks ago recognising the anniversary of decriminalisation, primarily of sodomy in the state. And it was a great time. Love a party, I hate crowds, but love a party and there were a bunch of people there who were not part of community necessarily, and who were just having a dance and having a drink. And that's fine, have a dance, have a drink, love that. But I was curious and asked, do you know why we're having this celebration today? And they just went it’s just Pride, It's just fun. It's just great. Well, no, this actually is a really, really important thing for us, this is an important moment. And you are being a tourist right now. You haven't even questioned why you're here. You're not even aware that you're allowed to be here as an ally, not an active one, but as an ally. We need to ask ourselves, this is essentially positionality, but where do I sit as the researcher, as the person. One of the things that irks me and there's a lot, is getting questioned in research, I say research under this very vague area because I don't want to blame anyone. But as a queer person doing queer research, I get questioned about my bias all the time rather than seeing that as expertise. But a straight, cisgender researcher who's doing research on queer populations will not get asked that question or very rarely get asked that question of, are you biased? We just don't ask that. And so it's interesting. It's very interesting to sort of say again how I see that dynamic and see where that's sort of playing out at the end of the day.
Jacob Thomas [00:45:18] And finally, I just want to say be comfortable being wrong. I'm so comfortable about being wrong. I know that can be hard for us in research, but please be okay being wrong. It's very necessary that we do that and that we're willing to change.
Jacob Thomas [00:46:19] Homo normativity, I think again comes back to that point around assimilation and in research practice, what I would ask you consider again, not trying to grab queer folks and yes go here, you fit here, this is how you fit in compared to us. You act straight enough or cis enough or normative or normal enough, so we can just kind of chuck you in here. And that's not how it works. That's not good queer research, that's just swooshing, and that's kind of it, right?
Jacob Thomas [00:46:55] And I'll just leave you with this second slide. When you are researching us and hopefully you're researching with us as queer people, we need you to see all of us. We need you to see all the mess. We need you to see all of the trauma. We need you to see all the success. We need you to see all the banality and all the benignness. We need you to see all of it because we are whole people. If you're going to call yourself allies in the research space, you have to really put that hard work in. You have to want to see all of us, because if you don't, then so be it, we probably don't want to work with you or we will work with you and then be really disappointed. So as you're going through and doing research, do not forget about us. Please do not forget about the hard bits or the messy bits or the confrontational bits. Take all of us on at the same time.
Jacob Thomas [00:48:10] And finally please just remember that there is no LGB without the T. We need trans and gender diverse people to be included in research as best as possible. And again, if you're just looking at sexuality and you don't include gender, you're going to miss a really key part of that. I just want you to keep that in mind, too. And look, that was a smash cut of everything, I hope that was quite useful. Thank you all so much. I really appreciate it. And, Rachel, back to you.
Professor Rachel Skinner [00:48:45] Thanks so much, Jacob. Excellent presentation and thanks so much for your advocacy. Your enthusiasm for getting this message out, it's such an important message. And I'll just say that I know there's a lot of focus on youth and I do acknowledge your point about we're not focusing on other areas as well. But speaking as a researcher in sexual and reproductive health of young people for my entire career, I do recognise that there is very little research in this area in young people. So even though there's a lot of attention, it's extremely difficult to do research, I feel like we are at a bit of a watershed moment, though, in time where it's starting to become embedded in some of the mental health research and some of the other areas where it's so important in mainstream health concerns. So I'll go to some of the questions now. The first question is from David: "Is there a framework that can assist advancing the field of queer health research or a queer literacy framework for research and practice?"
Jacob Thomas [00:50:09] Not that we've come across. There's no handbook, I guess, on doing this. I remember I was looking at this for my PhD to see if I could actually build a framework that we could apply somewhere, and it got a bit too hard, so I canned it. .. I'm onto something else now. Because we don't. I also don't know if it would necessarily be helpful. I think if we had something that was very contextual to say an Australian research experience, that could probably be fine, that might work. But if we tried to take that and apply that in any other context, we'd just be missing the mark again. There was a conversation I had again with a colleague where we were looking at a study that was done, I won't mention which one, but they had a thousand participants and the attrition rate for the queer participants was abysmal, and so they ended up only having six out of a thousand or ten out of a thousand in the end. And so they just discarded the data and that was it. And I get that from a purely numerical point, but I still would have grabbed that and just sort of gone, okay, well, look, I'm going to take these out because I can't analyse them this way, maybe I can do it in a different manner or method or what have you. Let's just do a whole different thing. This is what why I mean when I say we need include queer folk in research, is that yes I want you to include queer folk in research and these big studies and everything and make it known and make sure that we're included in there and present, but don't recruit us and then not use us further down line. I think that's a really useful thing, we give really useful insights that aren't just about queer perspectives. A lot of that queer health stuff has been applied into general medicine and general health, and you just don't know it. Things like top surgery, for example, has absolutely revolutionised the way we do mastectomies and revolutionised the ways in which plastics work and a number of different fields is what we just aren't unaware of. So I think it's about trying to find the queer bits that do already exist. Don't just just cram in where possible. But if someone wants to make these frameworks by all means, please go nuts, because I'm sure it would be really useful. It'd be great.
Professor Rachel Skinner [00:52:58] Thank you. So look, I'm really sorry, it's going to seem like I'm biased, but I'll just ask the question that I ask because it relates to this. What advice do you have about how to conduct respectful community engagement in research? Because that is part of getting that research literacy around LGBTQ people.
Jacob Thomas [00:53:25] This is going to sound quite a bit obnoxious in a way, ask us really, at the end of the day, but pay us for our time, like acknowledge us within that. I'm a massive fan of co-design for this exact reason. I love people being able to come on board with lived experience and saying what do we need to do that, we sort of position ourselves backwards a little bit and sort of say, actually, I don't know. That's fine. Can you come on board and we'll do equal work within this. I'm conscious now that where I sit, I'm getting less and less community rooted, if you will. I'm more and more in the tower, in the beautiful ivory tower of research. So I have to really question my deep connections and how sincere my connections are with community because I could just research something and just be like, ah, I think it's fine, whatever, and not question it. And I could very much be wrong all the time. A lot of queer researcher have been wrong about a lot of queer things because we're people and we haven't checked. So I think community co-design, again, I'm quite biased with that, so I think it would be good. But also if you've got the token queer person in the research team, please do not overburden us, but if you want us to work on something, pay us for it, bring us into that, put us on as a C.I. for a grant or give us the fellowship or make us first author or something to really help out with that. Again, being an ally is about action and it's about putting that action forward. So as long as you are sincere about it and again, if we tell you that, no, that's not the right way to do it, you take that on and are fine with being wrong, great, cool. I think it really comes down to just accountability. At the end of the day, just be accountable for your actions, apologise if you get something wrong, sincerely, and we move on, and that'll be it.
Professor Rachel Skinner [00:55:38] Thank you for that. And Kay has asked a question: “What country is the most progressive in this area of research?" Who can we learn from or take the good examples from? Is there any country?
Jacob Thomas [00:55:55] It's so interesting because it depends on who you ask. If you ask researchers, they'll probably tell you it's my country, wherever that is. It's probably Canada or certain parts of the States, or probably New Zealand. Or it could be Malta or it could be wherever. But what is always so interesting and I love this, is that the queers talk, we always talk and it's so interesting this is the whole reason why we have the apps, Scruff and Grinder and stuff, It's not for the hook ups, it's purely just to check in be be like, are you progressive, what's happening? When we compare notes, none of us think that our countries are the most progressive ever. And again this is a problem with research actually not meeting community need. Community's not reviewing papers. We're not reviewing, and that's probably a wild concept to point out, but we're not reviewing if the paper that was written was actually relevant or fit for purpose or the terminology was correct or anything like that. And thankfully journals are getting a little bit better. But also your average person, average queer person probably isn't reading the paper, they probably didn't really get access to it. I'm not trying to be facetious because it's a very important question to ask, but the answer is it depends who you ask, because we're producing research at a rapid rate especially in the sciences, especially in medicines. We can't keep up with what's been published half the time. I can say oh I got published in X, Y, Z journal, or here’'s my book chapter or whatever. But someone in community could very fairly turn around and just be sort of like, ,ow does that affect me? I'm still poor. I'm still at a heightened risk of homelessness. What's it actually doing? And that's a really fair cop and a really fair question to get thrown back at us as well. So I'm going to say probably no one is the most progressive, let's just say Canada, because why not.
Professor Rachel Skinner [00:58:22] Well, they did the census.
Jacob Thomas [00:58:25] But literally the bar is so low.
Professor Rachel Skinner [00:58:30] We've only got a minute left, really. But Caitlin's asked a really good question: "What advice do you have for conducting query search in spaces not previously accommodated for such a perspective?" So maybe conservative environments.
Jacob Thomas [00:58:42] Make it happen. Push on mate, push really hard. Pride started as a protest, push really hard. If you have to build the evidence and the narrative, fine, do that, but tell that story, make them listen to you. This is my advocacy coming out. Make them pay attention to it, that's it. Because it's necessary. Don't try and be too nice about it and try and be too polite about it, cause a riot and make them pay attention to it.
Professor Rachel Skinner [00:59:20] Thank you. We've only got 30 seconds left, there was a comment that Isabel also gave in response to that, that you could read. And David also said something which I thought might be good just to finish on. We probably won't have the time: "But what are the smallest of daily things, our words, our thoughts, our actions that we could all do every day that would shift the conditions that hold the queer determinants of health in place?" I don't know. I think it's just speaking out whenever you can at every opportunity.
Jacob Thomas [00:59:56] Show you care, that's the way to do it.
Professor Rachel Skinner [01:00:03] That's great. I think we might be about to get cut off in a minute. But I just wanted to say thank you so much. That was fantastic, for all that you covered, a real tour de force.
Jacob Thomas [01:00:18] Thank you.
Professor Rachel Skinner [01:00:20] We look forward to following your research and maybe we'll be reaching out to you. To help us with our research.
Jacob Thomas [01:00:26] Please do, everyone is welcome to get in touch, would love to make that happen. We've got time, we've got capacity, we've got endurance. So let's go. Let's make some cool queer stuff happen.
Professor Rachel Skinner [01:00:38] We love that. Thanks to everybody for joining in. And have a great afternoon. And we'll be in touch for the next time next month with awesome.
Jacob Thomas [01:00:48] Thank you, friends. Bye bye.