Hello and welcome to the SHE research podcast. I'm your host Diego Silva. Before introducing our guests, I want to acknowledge that we're currently recording on the unceded territories of the Gadigal people of the Eora nation. This is and will continue to be Aboriginal land. I want to pay my respects to those who have and continue to care for country.
Today, I'm joined by none other than Julie Mooney-Somers to discuss her paper, how a 25 year old periodic survey for lesbian, bisexual and queer women responded and adapted to gender diversity or reflexive analysis. Julie, welcome,
Thank you.
To begin, I want you to just give her listeners a bit of a summary as to what the paper is about.
Okay, so for just over 25 years, we and the we is researchers and also ACON health which is the largest LGBTQ health promotion organisation in the country. I have been collaborating on running a periodic survey about lesbian, queer and bisexual women's health. FSo every two years, we run the survey. So this has been going on pretty happily for X numbers of years. And it became clear from feedback that we were getting that we had some questions around how we were responding or thinking about gender and gender diversity in the survey. So the paper was really about, trying to capture some thinking and some actions and some processes that we have, that we'd engage with over really the kind of previous five or six years, of the survey.
So can you tell us a little bit about what that process was like,
Ah complicated, complicated and scary? I think it'd be fair to say, so I guess we had never asked about gender on the survey. It's a survey for women that that kind of inclusion criteria was activated when when peer recruiters approached somebody and offered them the survey and said, This is a survey for lesbian, bisexual and queer women. And those people said, Yes, that's me. So we had never had a particular definition around that we didn't ask people to tick a box. So I guess the first step we did was to ask a gender question. And as is the convention now, we asked a two step gender question, one, which was what was the sex assigned at birth, and the secondly was about people's current gender identity, that was kind of the first thing that we did. And then we knew that that wasn't enough that we actually had quite a lot more work to do in the survey. And so the that happened in 2018. And then in 2020, we did what we considered at the time, potentially was blowing up the survey, which was really quite dramatic changes to quite a lot of questions to make sure that they were inclusive of gender diversity, that they didn't make assumptions about the bodies or the anatomy of the people who were answering the question or the people that they were having sex with. And so some of those changes were quite significant.
So how did that process go in terms of what was the reception from the community that you were working with? Like you said, it was you said, complicated or complex? What were some of those complications or complexity?
Yeah, so I think, I mean, it's, it's really important to say that this is a community based survey. And so it wouldn't exist without the community, it wouldn't exist in the in the format that it does, without the community and the community has, has quite a strong sense of ownership over it. And so it was the community that was driving change, which was a combination of people coming up to me in cafes, actually, who recognised me as being associated with the research, or people writing anonymous feedback on the survey or people contacting us asking us questions about inclusion, that made it really clear that the community felt like we weren't doing a good enough job. And then the community partner, ACON, staff within that organisation talking to us about problems with the questions or problems with the data that those questions produced and how, how we interpreted that data. And I guess, as you know, it's important to say over over the last several years, there's been quite a lot of thinking and reflection and action around gender diversity within LGBTQI. Organisations and ACONs no different than they had been doing quite a lot of work around transgender, diverse, diverse health and really thinking about what did that look like? And how should that be done? So in some ways, this SWASH survey kind of became part of the momentum of that change.
You mentioned that people would come up to you even in cafes.
Yeah.
As a researcher, oftentimes, we're used to getting direct feedback from our peers, the peer review process, but of course, you're not sort of face to face, you know, the most we get face to face is in conferences. And then it's about ideas and whatever. It's not, you know, This is the survey's about me, this is what you need to do better.
Yeah.
What's that like to receive that feedback so directly?
Oh, I have a really clear memory actually of a particular person who I remember walking down the street. And somebody who I vaguely recognised was sitting at a table outside a cafe, and turned around and said, Julie, I need to talk to you about SWASH. So I guess it's, it's a reasonably small community, I think my because I've been involved with SWASH for so long, I have a profile in the community around SWASH so people recognise me, I also it's quite spooky, how many people I engage with who say, Hey, I filled in that survey. And so I think there's a, you know, I'm a part of the community, as well as having a, having been involved in research with the community or about community for a long time. So in some ways, this is kind of just it is kind of, I think this is kind of just what my experience is.
So is this I guess what, I guess what you're saying is, this is part of what it means, you sort of have this community led, community driven research.
Absolutely. I think that you, you can't do that kind of work, and keep yourself apart. And so one of the joys of it, I think, and also one of the challenges a wrong word, but I think, one of the motivations is around accountability, and a sense that I think that the SWASH survey, if it was just a University survey, it would look different, and we could get away with things that we would never get away with, with the community. So there's a sense in which we're, we have to be, we have to be accountable. And we also have to be responsive to the community, because because there's a strong sense of it's, it's, it's theirs, it will exist after me. It existed before me it's, it's bigger than the individuals who work on it.
What do you mean by it would look different if it was a university led survey versus a community?
Yeah, it's a good question. It's. So one of the issues, I think that comes up for surveys like this that have such a strong sense of community place, if that's the right word to use, is that there's a question about? There's an ethical question that sometimes comes up for me about we work work we spend a lot of time thinking about, we work hard to think about the experience of people filling in the survey. We also think about the consequences of the findings and how we engage with community around the consequent sorry, around those findings, how we frame them, that potential stigma that might be associated with particular findings. So it's quite, it's quite, deeply connected, I think there are changes that have probably been made, that we might not have, if we were just university based researchers and not not so deeply embedded in the community, both personally and also because the way that the survey runs, I think there are nuances that we wouldn't have appreciated. So the survey, I think, has been much more responsive and has changed because of that. That's one thing. I think the way that that language works in the survey is also that, but I also think that there's mistakes, maybe mistake is too strong a word, I think there's kind of things that we could have gotten slightly wrong that we would have been allowed to get away with, if we were if we could just be dismissed as university researchers. But I think there's a higher bar, because it's a community based project that people expect you to get things right. And they will tell you if you're not getting things, right. And, you know, its reputation really matters in these kinds of projects. And so you, you have to be I mean, I think you should be anyway, let me be clear about that. I don't think university researchers should get away with things, but I think that the stakes are higher.
Yeah, you there's, I want to get into some of the things that you discuss in the actual paper. As always, we'll put the paper in the link in with the podcast, I highly encourage people to read it. One of the things that that just kind of prompted me what you were just talking about, was there's a section about using the type of language that you use to describe individuals and whether you want to be or describe actions. And whether you want to be more, I believe with sex language.
Yeah,
Whether you want to use I guess the way I would sort of describe it to myself would be sort of more biological language sort of cold language versus language that sort of is more embodied or more humane or more human. And I was wondering, what you were just saying about I. You didn't mention the word identity but the identity of yourself as both a researcher and as a member of the community. Obviously this is about gender identity, that paper in many regards. But how? How did your thinking go you and your co-authors around the idea of language being more or less cold as it were? And the identity question in terms of representing the community?
Yeah. So I think that in some ways, this is, this is kind of the part of the paper that I think is kind of points to some some quite difficult conversations that we need to have, I think both in the provision of health care, but also in terms of research, which is about we've, we've been, not necessarily deliberately or unconsciously lazy, but I think we've kind of been allowed to slip and slide around sex and gender in a lot of research, because people have often used sex and gender as if they mean the same thing. And it was kind of an easy shorthand, if you said, Are you a man? Or are you a woman? That you could kind of people assumed they knew what that meant. So it told you something about someone's entire life, their experience across their lifetime, it also told you something about their body. And I think one of the challenges of a very welcome challenge around the kind of much greater attention thinking around gender diversity in, in society is to really be thinking about what do we really mean, when we're asking a question? What is the, what are the kinds of assumptions that we're making around bodies, and identities and experiences. And so in general, our survey used language like, woman or man, as shorthand for those things. And that became that was generally okay, when we were actually talking about identity things. But when we were actually talking about sexual risk, we actually needed to ask about bodies. And so shifting from a kind of what felt like a warmer, friendlier kind of identity based language, to questions that were asking what felt like quite cold, more kind of biomedical kind of language. So we kind of went from asking people about their their partners, to asking about whether they'd ever had sex, that involved a penis and a vagina. And that was a really diff, that's a really different kind of set of questions to ask, in the middle of this survey, where it's important to remember, a lot of people are filling it in at an event at an entertainment event or in a pub. And so kind of thinking about the experience of that.
We spend a lot of time thinking about that particular question and how we dealt with that language. And, and ultimately, we have to say, well, this is not comfortable. Because we're in transition in this moment, we kind of, and there's been a lot of debate around, for example, you know, whether we talk about mothers and whether we're talking about breastfeeding versus chest feeding. And there's that there's been a bit of a push to suggest, I think, in a panicked kind of way, that we want to get rid of mothers and just talk about parents, or that this kind of erasing of women, or erasing of breastfeeding, to talk about chest feeding. And I think we kind of call it out a bit in the paper to say that's, that's an extreme, which I don't think anyone is actually asking for that kind of language change. I think what actually people are talking about is inclusive language. So that might be that we talk about mothers and people who have given birth, that's not difficult language to use. And so I think, if not, you kind of one of the things we realised during the process of changing the survey was, we don't have necessarily the best alternative language when we think about inclusivity. Yet, it feels like we're moving to something. And it might be that the language that we use will just be a bit uncomfortable for a bit and we all have to get comfortable with it, or we will come up with new new terms. And so that means that we have this, what feels like a very blunt kind of question in the middle of a survey, which is much warmer and friendlier.
One of the themes of the paper is this idea of comparison? You mentioned it's been 25 or 26 years since SWASH started, as a survey intended to be able to have longitudinal data about a community that's often well that is marginalised and not represented in another data sources. Obviously, changing how you ask questions while introducing demographic questions and asking questions about identity poses challenges to comparison or there's an opportunity there's a loss of opportunity for comparison, maybe in its most extreme form. How did you resolve that? What was the thinking that went into that challenge?
Yeah.
So I think that that question about the potential lost opportunity for comparison was the thing that slowed us down, seriously slowed us down in making changes. And so I guess we'd always thought of SWASH, the particular power of SWASH was in trends, so that we could look across. It's not a cohort study. So so we can't say about particular individuals changing, but that we can look at, given that the we do the survey in exactly the same way, at the same time of year, every two years, with the same questions, it was quite a powerful claim to be able to say, well, this is what's changing in in this community. So changing those questions, and for some of the questions, it might be a tweak, but it might produce a profound change. And we didn't really know what that would mean. And so we worried that it would mean that we couldn't make comparisons. And as I said, that slowed us down. And I think then we realised that, that if we worried that we would lose the comparison opportunity, it meant that we thought the data that we had was accurate, and was reflecting the complexity in the community. And once we kind of realised that that actually, we weren't entirely confident about that, that well, then the kind of question about comparison kind of became a bit nonsense, because it was actually well, we don't really know, we don't have a really good sense of what we might have been missing before. So it's important that we make the change to do a better job now. And that, yes, that might mean that we did lose those opportunities for a comparison. But to stay with the status quo, it became a bigger problem for us. So the quality of the data became more important than the potential for that comparison. I think that essentially, that's what that came down to
What does this mean, you mentioned in the paper, there's a section where you talk about significance in statistical significance versus other types of significance. So has you're thinking about what constitutes significance changed?
I think it I think it had to, because we couldn't necessarily so for example, it we used to ask, have you had sex with a man? Now, it didn't specify if we meant sis men, or trans men, or all men. And when we change the questions, we're much more specific about when we're being inclusive and when we're not when we're being specific. And when we need a body part or not, and not an identity. So can we compare the question that asked in a vague way about men before with the questions that are now asking much more specifically, that became the kind of question for us. Now, I'm, I'm not a statistician. It's really important that I say this. I'm a qualitative researcher, really. So I bring a qualitative sensibility to this, which I guess means that I think that we can make those comparisons as long as we're really clear that we're not making them in a statistical sense. So we can say, well, here's a trend across time, while we asked this particular question, we now have two years, or sorry, two iterations worth of data with the new questions. Look, the trend is the same, the numbers might not be exactly the same. And that's why it's not statistical trend analysis. But, in terms of being able to make an interpretation, and to make an argument about it, I think you have to act from my perspective, it's about saying, well, actually, this looks very similar. So how, and that's an argument that you make to say, How comfortable are we feeling about that comparison? So I think that's the kind of that's the kind of argument that we're making.
It's interesting, I'm, this is me reading into your paper. And but it really is a really great example, one of the things that we teach students is around challenging orthodoxy. And the idea that just because p values always set at point 05, doesn't mean that it ought to be for every single study, say, and there's, there's all this orthodoxy in qualitative and quantitative works, and perhaps more, so we see it in quantitative. But I think this is a really great example of actually thinking through what is significant for your community, what is significant for the science, right? Because, as you mentioned a moment ago, and as you mentioned in the paper, if you're if your inclination is to change the question, then there seems to be something that wasn't captured in the previous generations of the survey, it means that there is a better way to capture the truth in quotation marks whatever you mean by that. It's a really interesting example of exactly challenging, I think, some of the orthodoxy around research methods.
Yeah. And I guess also a kind of a question about, well, for what, so what's good, what's good enough? And, and I think that that's, you know, it is swash, swash is, is an act of activism. You know, it was a survey that was produced because health promotion organisation had a responsibility to their community and realise they had no data to act on. So they were looking for evidence in order to know what to do and I think swash has always been that and it kind of still holds on to, although it's kind of in some ways more institutionalised. Now, I think it still has that activist heart to it. It's very DIY. We get no formal funding. So ACON provides the funding through in kind and other sources. But it's not it's not owned by an institution, a mainstream institutions owned by ACON. And so I think that the there's a kind of a question there about what what are, what are the community needs? What's good enough in order to inform action? And I think that that's a different kind of question. And that's, you know, if if our data shows, for example, that is that a proportion of the women who fill in our survey, are having sex with men who have sex with men, and they're not using a condom, it raises a question about whether prep should be being targeted or made available to those women. And at the time we wrote the paper, the answer was, No, you couldn't, you couldn't offer it to those women, they weren't any of the any of they didn't fit into any of the eligibility criteria. So it kind of doesn't matter that much has statistically significant the change is over time. In some ways. It's the fact of it, I think, is the important part.
The capturing of it.
Yeah, yeah.
As a researcher, what are the things that you've pointed out? I think in this conversation, as well as in the paper, is being forced into be comfortable with a dynamic changing situation? How has that sort of changed your thinking? And what would be some recommendations you would give to those researchers, those of us listening who do research about sort of embracing dynamism and sort of changing norms in the type of research that we would do?
I think this really goes to values, which is what's the purpose? What is the purpose of your research? And I think kind of holding on to the holding on to certainty is about is about our comfort, or? Yep, it's about our comfort. And but it's not ser, it's not serving. In my, from my perspective, it's not serving the communities or the people who were saying that we're doing our research for. And so one of the one of the points you make in the paper is, we've set out what the questions look like at that point in 2020. And we say really, clearly, this is not a model for the questions, don't use these don't think that we're saying here are the best questions to use. Because for, for most of the research that we're doing in SWASH, and if most of the research, I would be involved in quant or qual, there are social categories that we're talking about which are inherently unstable. And so pinning them down or trying to fix them, is convenient for researchers. But it doesn't feel like it's particularly useful, because it so quickly shifts out of date. And I think, taking the time to reflect back on how things had changed, and how our thinking had changed for this paper was really interesting to realise how there were things that were kind of best practice in 2018, that were absolutely not acceptable in 2020, and how quickly those things had shifted in relation to gender diversity.
But I'm sure that's true for all kinds of things. And so thinking about, well, how do we, if we get caught up in this idea that well, no data is king, and that we can pin those things and we need to pin those things down, we miss all of that other stuff that happens and I you know, on a professional level, I can quickly become not very important anymore. If I if I allowed that to happen. But on a on a personal level? Well, no, actually it means that I'm not doing my job, which is about trying to provide data for action, which is what the purpose of SWASH is.
So picking up on what you just said. It's best for your career or one's career to actually have data that can be comparable across time, even though like you said it's not a true longitudinal study. You know, what's best for our careers sometimes clashes against what is good for the community. How was that? That sounds like a struggle. How did you come to the resolutions or the conclusions that you did in terms of exactly what you were saying a moment ago? What's good for you as a researcher versus what's good for the community? And was that ever a struggle for you? Or was it pretty clear what you what you were gonna do?
I'm just a better person No, it's really hard to answer that question without sounding smug right?
You but I asked that so you can send a smug as you want.
I had the absolute privilege of being involved in research. About Aboriginal and Torres Strait Islander people and communities. And I learned an awful lot and was all of the kind of the sensibilities and the ideas and assumptions that I had as a as someone who had come up through a kind of research hierarchy. All of it was challenged, and, and in some ways, really broken down by often and community people rather than I mean, researchers to Aboriginal Australia researchers were an important part of that. But there was also community people who were were entirely unafraid to say, What bullshit are you talking about, Julie? And I think that that really made me think about purpose, and really thinking about what's, for what, what am I in service of? And I think, I guess in some ways, I do think about research as a service. It's a service to community. And it's important to think about who that community is, and what best serves their needs. I mean, I say that also from a place of privilege, because I have a full time continuing position. And so I can, there are some easier choices that I get to make because of that. And if I wasn't in that position, and I was having to fight for funding, I might feel differently about that. I think it's important to say so I think, I guess it's I guess it's partly that, it's partly also being part of the community is I think that that also then kind of shapes the way you kind of think, and I'm surrounded by other researchers in LGBT communities, who are doing the same thing. So I feel like it's kind of it's a norm.
What's been the reception into the paper within the community?
We, we presented the content at several conferences and seminars before it was published. And in some ways, the reception to that has been more interesting than the reception necessarily to the paper, I think. I was really surprised at how many people came up to me afterwards, and thanked me for the space it was making. For, for the acknowledgement that this is these are some hard questions to think about in relation, particularly in relation to gender diversity, and how how the kind of taken for grantedness about asking you about sex and gender in particular ways can't be sustained. And, and are also talking about the way we did it, which it sometimes felt very messy. But I'm not sure that there was any other way through it. And I don't need I mean, I don't say that in a way that suggests it's resolved because it still feels dynamic. So I think that the reception was mostly around people saying that it resonated, that they recognise some similar struggles, and they appreciated us, documenting them and kind of talking about how, what we've done with them. I guess the other thing is, it's not very common for people to open up research process in this kind of way. And so it's interesting hearing from researchers who kind of feel like you're very brave. But again, it feels like that it's too it's too important. And and I feel like we really need to do this better and get a writer I guess. And so that that means we might need to point at things and expose things who might otherwise be counseled not to.
What is next for SWASH and next for you.
So we are just finalising analysis of the 2022 data. And COVID blew everything up in a different kind of way, and in some ways, created opportunities that we would never have been, we might not have been brave enough to take. I think that's true for a lot of research like this. And so I guess we're considering what SWASH will probably look a bit different in the future. Because of that, I think it'll be much more on an online survey and less than kind of paper in person survey. I guess the other thing, we took the restriction off tick one box only on gender and sexuality. And so we're looking at data at the moment on what happens when you let people tick all the boxes, which is not what the ABS standard tells you to do. As a kind of recognition that there are that people's gender and sexuality is much more complicated than a single box and how do we live with the compromise between what stats needs and what community wants to be able to say about themselves and how they want to be recognised.
Thank you, Julie, so much for joining us today. I want to thank you for listening to the episode of the SHE research podcast. You can find this fabulous paper that we've discussed today. linked in the episode notes I really encourage you to give it a read. Along with the paper you're gonna find a copy of the transcript of today's interview as well. SHE pod is produced by the SHE network and edited by Regina Botros. You can find our other episodes on Spotify, Radio Public, Anchor, or wherever you get your podcasts of quality. Thanks again for listening. Bye
