Undisciplinary
Undisciplinary
Breaking Silences: Talking with Sianan Healy on the oral history of Infertility and Miscarriage
Ever grappled with the understanding of how your personal narrative could shape historical perspectives? This episode takes you on a journey through the untold stories of infertility, alongside Dr Sianan Healy, a historian at La Trobe University. She walks us through her personal experiences with infertility, which have been the bedrock of her research. She also highlights the importance of individual narratives in examining the complexities of infertility.
The conversation goes deeper as we explore Sianan's ground-breaking research paper - 'Broken Bodies, Oral Histories of Infertility After Women's Liberation Movement.' Through her research, we understand the emotional depth of personal stories and the challenges of interpreting them. As we navigate the changing dynamics of women's agency in the IVF industry, we also examine the profound impacts of the IVF process on women's mental and physical health. We also scrutinize the silence around miscarriage and how it negatively affects women's health.
Finally, this episode underscores the urgent need for improved women's health education. We discuss the societal devaluation of motherhood and the complexities of reproductive identity, and their lasting impacts on women's sense of self. Tune in to this poignant conversation as we unravel the complexities of infertility, miscarriage, and women's health. It's more than just a discussion; it's an invitation to contribute to the narrative that shapes our understanding of these crucial issues.
Undisciplinary - a podcast that talks across the boundaries of history, ethics, and the politics of health.
Follow us on Twitter @undisciplinary_ or email questions for "mailbag episodes" undisciplinarypod@gmail.com
Undisciplinary is recorded on the unceded lands of the Watarong peoples of the Kulin Nation in Geelong and the Gadigal peoples of the Iroha Nation in Sydney. We pay our respects to Elders, past and present. Welcome to Undisciplinary, a podcast where we're talking across the boundaries of history, ethics and the politics of health, co-hosted by Chris Mays and Jane Williams. Okay, so welcome to another episode of Undisciplinary. Welcome, jane, how are you going?
Speaker 2:I'm going pretty well. Thanks, Chris you.
Speaker 1:Pretty good. I was reading, though, before we came online here, the quote from Anton Chekov I was reading Reddit. I wasn't reading Chekov, but he said when a lot of remedies are suggested for a disease, that means it can't be cured.
Speaker 3:And I thought that was quite interesting.
Speaker 1:And it came to me through Instagram, through a parenting Instagram influencer which I thought, yeah, it was quite interesting also. I mean they were talking about in the context of parenting manuals that the fact that there are five million parenting manuals suggests that there's no one-way to parent. But I think in a lot of the conversations we have in relation to health and the politics, ethics and histories of health also does, for some areas at least, testify to, the multiple or multiplicity of remedies suggest that perhaps there is no single cure. Anyway, that's Chris's thought corner for today.
Speaker 2:Quite like that, chris. It was definitely a brainy thought.
Speaker 1:Yeah, I was going to try to pass off that I was reading one of Chekov's plays, but I thought that might be a bridge too far. I'm not sure if I can name a play off the top of my head. Probably something grim, some Russian starving somewhere. But anyway, we're going to talk about more interesting and research based topics today. Jane, would you like to introduce our guest?
Speaker 2:Yes, dr Shannon Healy is a Melbourne-born woman of settler Australian settler Aotearoa, new Zealand and Italian descent. She is a historian at La Trobe University where she currently holds a Tracy Baneva-Noah Ma fellowship, undertaking oral history research on experiences of infertility and miscarriage. Shannon also has a research background in histories of First Nations, assimilation, education and housing, with a focus on themes of mobility, place and the built environment. She is a co-chief investigator on the ARC Discovery Project Indigenous Mobilities to and through Australia, agency and Sovereignities. Her work has been published in Australian Historical Studies Transfers into Disciplinary Journal of Mobility Studies and History Australia.
Speaker 1:Welcome, Shannon.
Speaker 3:Thanks, chris and hi, jane, good to be here.
Speaker 1:Yes, it's been a long time coming. I think maybe I floated the idea even. Maybe at the Australian History Association Conference a couple of years ago, I don't know. Every time I've heard your research I thought that it would be very relevant and great to bring on to the show.
Speaker 2:The show makes it sound much more grandiose than it is, please go with it.
Speaker 1:Part of the rationale of the podcast when we first were setting it up is to provide a place, obviously, to talk about the politics, history and ethics of health and medicine, but also the undisciplinarity of it, to think about how different disciplines approach different questions and also the undisciplinarity and unplanned way that many of us have entered into areas of research and topics of interest. So it would be interesting to hear from you how did you get into the kinds of research and kinds of work that you've been doing? What sort of paths?
Speaker 1:did you walk down to get there?
Speaker 3:Yeah, thanks, chris. I was just thinking I think that we maybe didn't meet at AHA a couple of years ago and I gave a paper when I talked about how I came to find myself doing this sort of research on oral histories of infertility and that it was a very much a succuous path. But I took to get to this work Because I think that paper, if I remember correctly, was really talking about my decision to sort of remove the falsely constructed barrier that we often put up between ourselves and our lives and the work that we do. Because I was a historian first and foremost and my PhD background and all of those you know, all of the work that I was doing was really very much archived based histories, australian histories of First Nations, settler relations, very much so. 20th century histories of sort of policy, government policies of assimilation in the 20th century and the responses of First Peoples to those policies in southeastern Australia. So, yeah, an archival historian, and I suppose sort of saw myself as being that sort of traditionally sort of objective kind of historian who was approaching something because it's relevant, because I live here, I am a settler Australian, I am a beneficiary of dispossession, so I had that self-reflectivity in my work, but it also was something that I did out of interest, I guess. And then, yeah, I found myself the son I wanted to have a family and I couldn't. At least it took a really long time and I was in the middle of sort of that precarious post-PhD period of applying for fellowships and doing sort of you know bits and pieces of teaching work and IRA work and that sort of thing and trying to juggle that with IVF and miscarriages and having a lot of miscarriages and it just sort of I mean obviously rocked my world and it rocked a lot of things.
Speaker 3:But because I'm a historian, I went looking for histories of infertility. I went looking for things that I could read to help me make sense of what I was going through, to help you know. That gave you know I wanted the historical perspective. I think that's just the training that we have as historians and it just it wasn't there. It was not there except in the sort of the memory kind of individual narrative sort of style of writing about it. And I just I became I became a bit obsessed with it as a topic and so I obviously I was not in a position to just change my course of history work that I was doing. But I started just keeping bits and pieces that I found and thinking that it would be something I'd like to go back to when I got the opportunity. And so we you know we were, I would have a child and I took maternity leave and all that sorts of things.
Speaker 3:And I came back from maternity leave and I, by the stage I was at the TROBE University and they had they started offering this the Tracy, bannevaneau, mr fellowships, which are fellowships for people who have caring responsibilities and who have had significant interruptions to their careers due to caring responsibilities, and it really it's a bit.
Speaker 3:I was advised that it would be a good opportunity if I wanted to work on this different project which I'd been discussing with my mentor, and so I put together a pretty brief two page I think that was the limit two page policy, so project outline and then also a statement about why I was the right person to do the work and what my career interruptions were.
Speaker 3:And it was at that point that I was like, right, well, I'm going to talk about the career interruptions of being a parent and being the sole sorry, the primary care provider, but I'm also going to talk about IVF and I'm going to talk about miscarriage and infertility, and because that just was massively disruptive I mean it's you know, it's disruptive to my work. It was disruptive to all aspects of my life and my husband's life. So I did and I was successful and that's how I ended up in this working on this project and I hadn't done oral histories before since, I think, on this year, but I really felt that I wanted to take that, that oral history approach as well, because I thought recording the stories, the private kind of personal experiences, was a really important element of trying to write this, trying to write this history.
Speaker 2:Can I ask a methodological question, shannon, because I am not a historian. I'm wondering sort of if you could explain a little bit about what oral histories are and how they differ from interviews, even like unstructured sort of wide-ranging interviews.
Speaker 3:Well, I think it's partly that the interviews that I did as an oral historian were a life narrative approach.
Speaker 3:So in taking the life narrative approach, you're capturing the context of a person's past, their memories of their childhood, their ideas about family, school, the culture and society that they grew up in and they lived in and, yeah, sort of.
Speaker 3:I think that that's fundamental to the story is they tell about themselves and about their life, how they sort of make sense of their life, particularly as something that's embodied in a person, I think as childbearing or trying to have a baby, or infertility. But I think really it's not so much the interview itself that is the historical element of it, as the perspective, taking the historical perspective as a historian, in the way that I interpret those stories that are told. So the sorts of narratives that I collected I mean they could be used in all sorts of ways that are not history, but what I try to do with them is put them within that sort of, you know, understand them as historically contingent, understand them within the perspective of the politics and the medical history and all of those sort of aspects of the life in which the person, the life of the person that is telling me their story.
Speaker 1:So just continuing with your own story, not that we're going to do a full oral history interview here, eva, but so in moving into this oral history project around infertility, did you, how has that sort of continued to play out in, I guess, your sort of not necessarily career development but research development, research interests?
Speaker 3:Yeah. So I mean, I just I really fell in love with oral history and with the relationship that you can develop in that interview space. I also don't, I think when I, when I decided to do that, I didn't fully appreciate the complexity of using those stories and interpreting them. It's really, you know, there's an ethics, I guess, to that that becomes a really big part of the writing of the story. So how is the person who you're interviewing expecting you to use their story? What are they hiding, what are they not telling you? How are you going to read between the lines and how are you going to interpret that? And so that kind of complexity has to become a big part of the well, it has become a big part of the history that I try and write. It's not really a case of just taking the stories that people tell and sort of you know almost verbatim, putting them into paper with a little bit of an introduction and a conclusion. It's sort of a lot more than that. But I think that what the other really important aspect for me in oral history is that you can capture the private and the personal and the emotional, and that has become a really big part of the work that I try and do and also the way that it helps me to develop my skills in how I relate to the person who I'm interviewing, particularly, you know, and because I take that position as an insider researcher. I think that's something I try to be really explicit about in the way that I think about the work that I'm using. What are my personal responses to the stories? You know, the knowledge that I have, the experience that I've had, how's that playing out in the way that I'm relating to this person? And also how are they relating to me? Because they often they all of my interviewees knew that I had come to this through personal experience, and so that also, I realized, was impacting the way that they were talking to me in the stories that they were telling, the things that they maybe decided to not dwell on as much.
Speaker 3:So there's one example I can give. You is a woman who I was interviewing had gone into quite a bit of detail about the ongoing IVF and being successful in having a daughter and describing to me the joy that she had just walking her baby in the pram through the supermarket and she was crying. She was still crying with just the memories that this was bringing up and it was a really beautiful moment. And then she sort of paused and she said I want to. She said I'm really just conscious that this might be uncomfortable for you what I'm going to say next, and that just really took me back. But basically she wanted to talk about their decision to have a second child and she knew that we had not been able to and that we had tried and my husband and I had tried and ended up stopping. So we had to sort of have a conversation about that. Just, you know, that was really a moment which really kind of illuminated for me the dual nature of their relationship. And, chris, I can't even remember what your question was.
Speaker 1:I sort of just think this is all good it was about more of this sort of career trajectory, undisciplinarity path, but you know that's, I think this is.
Speaker 1:You know this leads us into the paper that we're going to talk about. Broken bodies, oral histories of infertility after women's liberation movement, which was recently published in History Australia, and also some of the things that you were saying reminded me, yeah, I think the talk that you did give at AHA about the that nature of the oral history interview and I think you know I've been using oral histories as well for my History of Biowethics project and it does, I think, one of the things I sort of have been thinking about, this sort of moral bond that's created between you and the participant in a way that when I have done, say, qualitative interviews, when you de-identify them, you sort of you know they may not even recognize themselves when they end up in a paper you can kind of use and say whatever you want. I mean, obviously I don't go so far in that direction, but there's not that same sort of how would they think if they read this, even though you know Listener.
Speaker 1:I do try to do that when writing with qualitative interviews as well, but there's a much greater sort of yeah, ethical burden and responsibility with the oral history interviews and you can, and that sensitivity comes across in this paper. So this paper, is open access everyone.
Speaker 1:I would highly recommend reading it. It is a really powerful piece of scholarship and also, yeah, I think, as you've said, was your goal to sort of talk about the silences in history. So I think one thing, just yeah, that was quite interesting is that you were interviewing, doing oral history interviews with women born between 1946 and 1980, with the goal to explore the ways in which fertility affected their sense of womanhood and the complex and challenging interplay between their embodied cells and their self perception of feminist identity.
Speaker 1:Because I think that sort of feminist movement is a cuts across all of these interviews in an interesting way. I guess. Just firstly, you know this historical period. What was, what drew you to that time?
Speaker 3:Yeah. So first of all it's it's sort of bookended in a way. This period. You know, you think about the. The oldest interview he was born in, I think 1946. That's right, I think you said that.
Speaker 3:And so she's really sort of trying, she's coming to age where she's wanting to have children, when these really, I guess, revolutionary sort of medical developments, techno, scientific developments are happening with assisted reproductive technologies, and also it's the period of the women's liberation movement, when there is an increasing space for women to take control of their fertility through access to things like the oral contraceptive pill and and also abortion Increasingly as well, although that that is uneven, I think, that access to that. So there's this sort of this, this conversation that's happening, this, this sort of cultural shift that's happening. And then also there's the technical and medical developments that are happening at the beginning of this, this period, and by the time we get to the, you know, and then the younger women I interview, I guess the daughters of these first, these first women. So how has this sort of played out across those generations is what I was really interested in in understanding and particularly what, what are some of the debates that were happening in the 60s and 70s around the role of things like IVF and IUI in women's lives and the concerns that a lot of feminist scholars and feminist activists had about these technologies, particularly in the context of the gains that they had worked so hard to make, around freedom from motherhood as being sort of a destiny. And how is that playing out now in the lives of the generations that had had come following them? And I think that you can.
Speaker 3:I think what I found in this paper and with the interviews that I did was that a lot of those concerns that that generation of women who were trying to have children in the 60s and 70s, a lot of the concerns they had, and I think that was shared still by women generations younger than them. I think that that's really interesting because I think we just sort of assume that you, these things change, you know that we have moved on when we, you know we progress towards sort of a more enlightened time. Certainly, there are certainly weird is a different time. There are different pressures, different political and social contexts, but there was a, I guess, a real, the insidious nature, I guess, of gender norms.
Speaker 3:Let's sort of get down to the nuts and bolts of it, the gender norms that the women's liberation movement were really kind of trying to throw off. They're still around, they just look a little bit different, and I think that we also can see that the neoliberal kind of capitalist period as well has a lot to just add to the fall in the way that the younger generations who I'm interviewing were trying to kind of make sense of what it means to be a woman, what it means to be a mother, within the context of sort of individualism and that really, and careerism yeah. So it's sort of I mean it's an interesting kind of capsule period because I think we're still grappling with a lot of the same things that we're occupying feminists of that period.
Speaker 1:Yeah, definitely, and so one of the things that you do in the article is I know you had a more technical phrase for this, but the kind of like repeated memes, if you like, of repeated sort of phrases or slogans or ideas that have been said in different ways and one of them that sort of occurred to me because it really resonates with some work that I've been doing in relation to interviewing people who have been going through IVF now in regional contexts.
Speaker 1:But this idea of desperate and duped, particularly for the so some of the feminist discourse, but not only we're sort of talking about women who are going through the early experimental period of IVF as being sort of desperate and duped during that time. And I see it now in with people sort of accessing experimental add-ons and doctors saying, well, if I don't provide it, they'll go somewhere else. And the way that some of the participants have been talked about in the study I've been involved in is, yeah, that they are, even though the you know all many of them sort of university educated, a higher career, some of them in the health industry, they're still seen as desperate and duped as a way to explain the failures or the lack of success within these medical technologies. But I thought you put a really interesting spin on it as wealth, drawing on Rayna Rapp's notion of moral pioneers.
Speaker 1:And so the testimony of the participants, you show that there was this relationship between the women and the scientists that had this certain level of intimacy, that it wasn't just this desperation and being duped, but they sort of knew what they were doing and had this relationship with the scientists at the time which sort of puts a different gloss on that relationship. I was curious if you could sort of expand a little bit more on that.
Speaker 3:Yeah, yeah, I think it's.
Speaker 3:I mean, it's just so. It's so interesting. You know, where is the place for women to have agency in the way that they interact with what is, in a lot of ways, an industry that takes advantage of vulnerability, and so it's, and it's commercial and private as well. So you know, the money making money is the bottom line right, so it's very. It's really tricky, I think, you know it's tricky to understand, it's tricky to, I think, as a scholar, to try and sort of to write about it without sort of taking, you know, taking either the position that women went into it knowing what they, you know, knowing what they were getting into and fully agent over their decision making, or that they were that sort of idea of the desperate. You know that they were basically being taken advantage of by scrupulous industries, and so there's some. I think there is somewhere in the middle of that, and I guess that's what I've been hoping to sort of draw out here. I should actually say that applying that notion of moral pioneers that Rainer Rapp has to to these early IVF patients was wasn't, it didn't mind, it was an idea that Sarah Ferber and Vera Mackey and Nicola Marx, exploring their global history of IVF, of the IVF industry. But I definitely I think it really struck a chord with me when I was thinking about the stories that I was collecting, the interviews that I was doing, because there were those people like so, for instance, lucy, who she was in her early 30s, in the late 1970s, and ended up going through intrauterine insemination with her husband's sperm. She's one of the women who I interviewed and so she was one of the first patients for the. You know this groundbreaking team of scientists and clinicians at the Royal Women's Hospital in Melbourne, mcbain and Alan Tronson I've forgotten McBain's first name, john McBain, yep, and, and so that you know these are. These are the first, very first people who. They were sort of the experiment in a way, but they had a relationship with those care providers, with the, and so Alan Tronson was the, the scientist, and Ian McBain was the clinician who worked closely with the patients and who saw the patients, and she just described their relationship as basically they were partners in a way and that they were really close and they had a good relationship. She saw him almost more than she saw her husband during during that period and I think that she felt she felt very much a part of that. Yeah, that it was a partnership that she was, it was a, she was a part of that rather than just just the guinea pig that was being experimented on that. She made decisions in that whole, in that whole process.
Speaker 3:But but I think, so definitely, I think that we can. We can sort of see it as being much more complex than just here. Here are people whose bodies are being used by scientists without them fully understanding it and fully appreciating the, the risks that they're putting themselves through and so on, which which a lot of the early feminist scholars at that time were more, you know, presented it more starkly in that light, as as being, you know, people were being taken advantage of because they were desperate. But the situation that Lucy was in is so different to where the industry has gone in the following 30 years that you know it's way, it's way more complicated now, and a lot of the younger women actually ironically see themselves as being less empowered and and less in control of what they were going through than some of those early women did. And so that's that says a lot about the way that the industry is under regulated and being privatised to become pure list of commercial operations, with the exception of some small amounts that are being done within the public system.
Speaker 2:I think, arguably the actual women In the situation you were talking about in the late 70s, having a good relationship with those women was probably important as part of research, right. And now if there's less research, it's less research oriented, particularly because the private companies don't share their data in the same way and all of that sort of thing, and so the actual woman, the individual woman, isn't necessarily very important, right, because there's always going to be enough people. So, yeah, depressing.
Speaker 3:Yeah, yeah, absolutely. I think the other thing as well is that because for women like Lucy, they basically lived at the hospital for the long periods of time because it was required, because the technology was not quite as advanced, so the monitoring needed to be more regular and they needed to know what was happening better, so they wanted to monitor more closely. But yeah, now that's less the case. I think there's sort of a better understanding of you know, you can basically just give a woman the medications, the chemical stimulating hormones. You can give her a sheet of when she should be injecting herself and how much, and she does that herself and she goes away and then comes back to get a blood test a week later and the whole thing, is sort of being outsourced to this kind of you know.
Speaker 3:You get a phone call saying, or some for some people it's a message, text message, saying do you know, don't forget to do this, do this now. That's the thing. So it's a totally, it's a lot less of a personal relationship that you develop with your healthcare provider in that way, and that's that came through with a lot of the younger women that they felt lower in number. That was a lot of you know that was the phrase that was used so often that they were just a number for the treating specialist. They didn't see the specialist or speak to them other than once or twice in the course of the cycle. The rest of the time it was just sort of you know, the nurses who would be in touch or the technicians who not to disrespect them and their care that they might take.
Speaker 3:But it did feel like there was a very little kind of personal care from the person who was making the decisions and less interest in knowing about you and what you're going through and how you might feel about the decisions being made. Yeah, so I, the other thing I should. I think it's interesting is those relationships still can exist and did exist and do exist for women now. But it seems to be that it's a matter of shopping around for somebody who you can connect with and a lot of people don't even realize that that is an option or feel not empowered to make those decisions about their own care. You know, the power imbalance is still really right within the patient treating, treating, specialist kind of relationship. But it says something about I think personality still comes into it but also says that there's not enough training being done around the need for personal personal care.
Speaker 1:Yeah, and yeah, I mean we found as well, yeah, in the regional context where there is a same degree of choice, it really just often was a sort of fly and fly out situation as well in more remote or regional areas, or having to travel in, and that then further limits the choice, because once you're there, you kind of want to, you know, go with the person you've arranged, and the continuity of care issues as well.
Speaker 2:Yeah.
Speaker 1:I think the technological development is really interesting to the way that with a lot of medical technologies they sort of create further distance, like even think of rudimentary things like the development of a stethoscope.
Speaker 1:You know, doctors no longer put their sort of heads on the chest yeah, the ears, but creates distance and yeah, the development of those drugs by Trounson and friends sort of on the one hand had the convenience of being able to regulate timing and then that also created distance. One of the quotes from your participant, ellen, I thought was quite poignant on this changing relationship, particularly in the context of the commercial and the profitability. She said I get really angry when I see adverts for these IVF clinics because I think it's a sales thing. I felt that when we were there it's a sales thing, it's no longer a care and well being, it's no longer looking after you as a woman, as a human being, it's just this process hand over your money and hear some drugs get pregnant. You're buying a child but no one really talks about the trauma that you go through at the time and what happens when it doesn't work, because it doesn't work for a lot of people.
Speaker 1:I think to me that was quite a powerful quote. But it also I'm not sure if you've seen Monash IVF's latest campaign, the brave ones and I think it just sort of shows the sort of responsiveness of you know, cynical maybe I am, but you know the responsiveness of commercial organizations in the way that capitalism capitalizes. So their campaign about the brave ones is sort of harnessing some of these feelings and then just showing people going through crying and what have you? And it will say you know, karen, two years being a brave one, but then the ultimate thing is that you know they threw Monash IVF.
Speaker 2:They will get the baby if they persevere.
Speaker 1:So it's sort of that. If you're familiar with Lauren Ballant's cruel optimism is sort of there as well.
Speaker 3:Yeah, sarah Franklin has done a lot on IVF. She's not a historian, she's a social scientist, the famous techno, scientist, writer, scholar, which she talks about. How IVF sort of offers, you know the sort of like that always disappearing end point. You know, because there's endless tweaks that you can do, endless sort of new technologies, new drugs, new add-ons that women are offered. So you know they go into IVF expecting at the very least some sort of resolution and that never actually eventuates. And the industry does that deliberately because they want to keep the patient coming back for more treatments, coming back always for more cycles. I mean, and so you know, yeah, there's that Monash IVF kind of the brave one, two years going, they're never going to show the person who's had 10 years and you know, 13 cycles and no baby at the end of it. So I mean, and that's obviously that's kind of their, their, their commission enterprise. They're not going to advertise the fact that a certain percentage of people are never going to have a child, but but and that it's not a small percentage you know I think that's
Speaker 2:an important part of the story that that keeps getting lost. You know, people are, I think, fairly bravely saying I did all this IVF and I didn't have a baby.
Speaker 3:Yeah.
Speaker 2:And that, I think, is quite often presented as an unusual situation where it's just not at all.
Speaker 3:It's not. That's right, it's really it's not at all. And particularly because women are often going to starting IVF a lot later, you know well, into their late 30s you know that the success rates drop even more. So you know those sorts of statistics aren't going to be advertised because they're not one people. That's not what the clinics want you thinking about when you come in.
Speaker 3:And I think, yeah, it's really to me it's sort of really interesting that the clinic has obviously taken that the increasing understanding of the fact that you don't necessarily get pregnant on your first or second cycle, that it might take many years, and they're sort of flipping it into this kind of whole narrative of if you really wanted, you have to be brave, you have to put yourself through this, but there is the reward at the end of it, and so it's almost like they're saying you know, if you are you really committed, if you don't want, you know, do you really want that child enough if you're not willing to put yourself through a lot of this? And that's a really big thing to expect of somebody, to ask of somebody, and it makes, I think, that what it does is it creates this really difficult bind for people who they always have to ask themselves when? When do I say enough? When do I say I can't do this anymore, that I need to sort of move on? And that was a really difficult decision and a lot of people found themselves continuing IVF for well after was, you know, having hugely detrimental impacts on their physical and mental health and their financial health and their relationships, because the option of saying no, I can't do this anymore just seems never really to be put on the table by their treating team.
Speaker 2:Yeah, and I wonder if this is a shortcoming of the Australian system as well. But there's not a no built into any aspect of it. Really.
Speaker 3:Yeah, that, yeah, I think sorry and I mean not not, not a no from the system.
Speaker 2:I suppose it's what I'm. Yeah, yeah, an external.
Speaker 3:Yeah, I mean interestingly for when it was purely public, when it was, you know, the Ellen transfer and McBain public health system. You know, in the late 70s and early 80s you not everybody got it was free, but you only got a certain number of cycles and that was it. And I mean that's also cruel in a way.
Speaker 2:Yeah, no way, there's no way to avoid the cruelty.
Speaker 3:I guess, yeah, but it's in it. Yeah, I think that it was because there was this acknowledgement that after a certain number of cycles, that the likelihood of being successful just drops off so drastically that that it, that it they make the decision for, you would be in.
Speaker 1:I guess ways in which time is, is plays plays out in different you know, not straightforwardly linear conception of time, and particularly in relation to reproductive cycles and bodies and and that endpoint, if there's, you know, in the 1920s the infertility would have been temporarily experienced more differently than now.
Speaker 1:Having this choice and this possibility of going through these cycles and hearing of stories of a woman who was 46 was able to sort of do this.
Speaker 1:But the other things that also not just time but also sort of silences, what's what's spoken, what's not spoken sort of plays out as well as what's seen and what's unseen. So just back to that sort of quote from Ellen about the trauma is not being spoken about. You also sort of, I think, draw out this again, this challenge of it's not so straightforwardly, as sort of getting women to confess or getting women to speak, like that also becomes a burden in on of itself. But there's also the challenge of silences, covering over some of these topics as well. So I just be interested to hear a bit more. Like you had this great phrase, the assumption of emotional uniformity, I think, in relation to some of these memoirs or sort of narratives. But yeah, how do how do you see negotiating, on the one hand, not wanting to force everyone to talk about things, but on the other hand, addressing these silences without, yes, this assumption of emotional uniformity?
Speaker 3:Yeah, it's, um, that's such an interesting kind of complexity with. You know some people want to. You know everybody sort of has different. You know there's a range of responses. Some people want to talk, some people don't. Some people want privacy. They don't tell their workplace, they don't tell friends, they don't tell family. Other people want to talk about it, but it's, you know, so it's not necessarily just sort of a case of sort of saying everybody should just be really open about their experiences of infertility and tell everybody, tell work, tell your colleagues that this is what you're going through, because it's not that's not necessarily what people want, but what I think, what they.
Speaker 3:What is missing is this idea that the invisibility of infertility, because we don't have enough examples of what it means. Yeah, the people don't see themselves being represented. So it might not necessarily be that you want to be personally talking about your own experiences, but you want to be able to see those stories being told elsewhere, you want to be able to read about it. You want your you know popular representations to have the complexity of identities and experiences that it just doesn't have at the moment, and so then you might feel at least that, first of all, if you do want to talk about it, that people can kind of connect with it a little bit more. You feel that you belong more. I mean, we know that you know it's through the power of stories and the power of seeing, you know sharing stories that make sense to you and that reflect your own life, that we feel connected to the people around us and the communities, and I mean that's what, that's what a lot of history is, and so so, first of all, I think that the silence and the trauma is perhaps sort of like the biggest silence of our society around us, rather than the silence that and that does impose silence on people, that imposes an expectation that you don't talk about it.
Speaker 3:But I think also there's sort of a you know when we think about, for instance, you know, the workplace, so how, you know this was such a big part of people's traumas and was how do they? You know, going through infertility, going through miscarriage or going through the treatment itself is over, like it's all encompassing, it's overwhelming, and you need to take a lot of time out of work, and work itself doesn't allow for you to have those sorts of experiences. You know, we that really came through this and I think one of the women who are whose story I refer to in that article that you're talking about, annie, she said that she spent her whole life basically trying to repress her reproductive self in order to be an ideal worker, because that's what her work required of her, and I think that that is so such like she's spot on that. That is so true. You know, the ideal worker is a white man who is probably of a certain age, maybe even has family of his own, because we know the statistics show that men with children earn more than men without children. So that's so much about you know what the ideal worker and the ideal you know the workplace sort of looks for.
Speaker 3:So when you know, when women go you know women do they bend over backwards, they tie themselves in knots to fit these reproductive lives into the workplace, or they just repress them or they just put them on, put it on ice until the sort of you know imagined time in the future when it's going to be more convenient, and then often they find that it's too late for them or that convenient time never really arrives.
Speaker 3:So that also enforces the silence, I think. So silence is really. It's so much more complex than just sort of feeling like unable to have a conversation with your you know, your friends or your family about what you're going through, or feeling that you know there's no expectation that you should, but maybe people would feel more willing to do so if they, if all of those other things, kind of made it easier to do so. But I think, yeah, the question about uniform or sorry, emotional uniformity, it's also this, you know it's there's there's really interesting debate that happened in US scholarship around miscarriage. Through these two, these two scholars, leslie Reagan and Linda wrap, I think.
Speaker 3:I said I just wanted to check that and it boils down to you know, we sort of assume that everybody, you know that there's this kind of this idea that people see their miscarriage baby either they, the baby they have lost, as a baby, as a fully formed kind of person and child, and that they are going to mourn the loss of that child in a particular way. And then, and so the you know hospitals now create kind of space for people to have those experiences. But not everybody necessarily is going to have that same experience, but some people are not necessarily the loss of a child, because that sort of implies some sort of personhood first of all, which is problematic. But it might be the loss of hope, it might be all these other things.
Speaker 2:Yeah, I'm going to jump in with a little bit of an anecdote here. Love an anecdote, but, but it relates to two things there. One one is about what you've just said, which is fascinating to me. So my first miscarriage was in the US and it was a wanted pregnancy and just thinking how to phrase this for the program, as we say, for the show. Anyway, we disposed of the fetus.
Speaker 1:Yeah. I just didn't even know what to call it but.
Speaker 2:but it was interesting because then I went into the hospital and they were really shocked that I had done that and made it clear that they were really shocked that I had done that as if it was a, as if it was somehow really as if it were the wrong thing to. I mean, it was so clearly not a thing to know from it, but that was really interesting. And also the other thing that was interesting to me is a sort of institutional silence. You know, you said that there's no uniform. The idea of emotional uniformity was there, but also nobody at any point told me that miscarriage was quite common. I had no idea.
Speaker 2:So I went through this whole experience it was quite a medicalized experience in the end in a hospital in the US and I had no idea that this was a common thing to happen. You know, it's like how did somebody not say this is relatively common? You know, and this is the percentage of people who miscarry is really bizarre, my friend told me. And then I looked it up and then I was like holy crap, you know, and that completely changed my perspective of the whole experience, because prior to that I had assumed that this was this, this big anomaly that might mean that I couldn't have children, because all it takes sometimes is some reassuring statistics.
Speaker 2:That would have been quite, quite easily and quite sensitively expressed, I think, but yes, so this is one of the reasons and I think for many people of a certain age that it was so, so interesting for me to read your paper, because I think there are all of these conversations that we have that aren't pulled together in the beautiful way that you've done. You know that it was really an interesting and sort of meaningful read for me and I'm going to send it to other people for open access.
Speaker 3:Yeah, I was so excited when I said that make it open access and thank you for telling me that it's really nice to hear, I think, and for sharing your story as well, because this is this is part of what I come down and writing this work that people just feel that they can share their story. When I had my first miscarriage, and I remember just sort of being in just you know, absolutely distraught, and then going into, going into my manager's office finally and and letting her know because I wanted to take some time off, and she said she was, she was wonderful, and then she said I lost my first child as well to miscarriage. And it was just, you know, is that moment, that opportunity for connection, that sense that I was not alone? And and you know, she had, she had two children it was just that sense of oh, okay, yeah, I'm not alone.
Speaker 3:I think that's a big part of it, isn't it? You do feel so alone and so afraid about, you know, because there's suddenly there's the, your expectations of your future, the visions you had for the life, suddenly all of that seems in doubt. So, yeah, it's, I think it's really powerful.
Speaker 2:Yeah having extremely assiduously used contraceptives for a period of your life and thinking that this is the only thing that saves me from being pregnant. I think that is a really common thing. It's yeah.
Speaker 3:Yeah, I mean this.
Speaker 3:This feeds into the bigger picture about research and women's health and the the dire lack of research on women's women's health, and most of the research is being done has been done on sexual reproductive health because, you know, women are seen primarily as being reproductive units.
Speaker 3:But, but, but the reality is that you know, we, we don't have enough training, we don't have enough education either of the people who treat women. You know the medical, medical professionals or even, when you think about it, you know most, most sex, sex ed, we, you know we're seeing a welcome kind of introduction of consent now, but where is the? Where is the education around infertility or miscarriage, or reproductive disease? You know, endometriosis is still has an average of six to seven years between the onset of symptoms and diagnosis, and that's partly because the medical healthcare practitioners aren't diagnosing it, but also because women themselves don't recognise what they're going through as being problematic, as as being not the norm. So if we had that, then we might actually have people being able to take more control over their fertility decisions and and also their reproductive health more generally.
Speaker 1:That, jane, you mentioned, yeah, that, that idea or that sort of the prevalence of the messaging of sort of trying not to get pregnant and using contraception. Yeah, two things about that one I, this trimester, was teaching love, sex and death to first year uni students and the topic of sex education came up and it was interesting and disturbing that some of these students who wouldn't have been in high school too long ago were getting the basic same kind of sex ed that I got in the 90s. You know basically how to put a condom on a banana and seem to be the. You know everyone.
Speaker 1:But and this came into one of your participants talking about their thought that you know that getting pregnant is easy and we've got to do everything we can't to stop that happening until we want to. And so I think she talked about coming off the pill and then not getting pregnant and that's what you know. For my experience, we took 14 years for us to get pregnant. Pretty much, I mean, there was on and off with different things but with contraception, but that idea, yeah, relating to that point about having a broader holistic approach to sex ed, which obviously is hugely political and a minefield.
Speaker 1:But yeah, these endometriosis is another one as well, and then I guess going. Maybe this is necessary for sort of teenagers, but you know, pre menopause and these sorts of silences around women's health, yeah, Jacob, just one, did I tell you Somebody I know well just a man, no my husband just won a quiz at his work on like International Women's Day or something.
Speaker 2:They had a quiz about women's health.
Speaker 1:And he was three men in the room, so it was all women and he won it.
Speaker 2:And he won it mostly because I'm just like like a flea in my beautiful husband's ear, but I'm just saying when he told me that I was like that is the grimace thing I've ever heard, sort of congratulations. But, I'm just saying I think, as a person who's very interested in health and bodies and things like that, I feel like I'm well informed and I forced my family to be well informed. It's really had to be cognizant, I think, of the lack of education. Yeah.
Speaker 3:Yeah, because it's sort of it's so much, it's missing so much that we don't even realise that it could be different. I think I'm trying to get at yeah, we just assume that this is the way it has to be. It always has been. Because, yeah, we the number of women who I interviewed they told me the story, laughing. But they decided today and their husbands decided they were ready to, or partners ready to start to have a baby and they had this magical night of sex that was going to conceive their child, the first time that they had sex without some form of contraception. And then they're imagining their child forming in their uterus and I think it was just.
Speaker 3:And the shock that came when it was like, oh, I'm not pregnant, it didn't happen straight away. And then the gradual kind of like building of concern as the months go by. But really you're like not even understanding how women's anatomies and how it worked, to the extent that they don't. A lot of them didn't even understand fetal windows of contraception, of conception, for instance. They had to learn all of that after and it was only because they didn't conceive really quickly that they did learn it as well. I think a lot of women probably do. A lot of people probably do get lucky and they manage to have a baby without ever learning about things like the way let's get really technical here the way that your mucus changes in doing your fetal window and those other things. So, yeah, that stuff could be taught.
Speaker 1:But it's not You'd say, just as a segue back to the article, because I think this comes in, and it's interesting to think about this idea of both, and then maybe another one of these sort of tensions between sort of thinking or being forced to think of oneself, women being forced to think of oneself, as I'm not quite sure if you said baby machines, but that's, I think, a common feminist sort of trope and then also this ignorance about the actual mechanisms and processes, and throughout the article.
Speaker 1:you sort of talk about this idea of the reproductive self, and so a quote from your article you say, along with this, internalizing of motherhood as less worthwhile than career ambitions. That was, I guess, referring to a sort of tension between certain feminist discourses, that you're referring to this idea that, whether internalizing of motherhood as less worthwhile than career ambitions, came a sense of unfamiliarity with the reproductive self. Is this kind of what you're meaning, that this unfamiliarity with the reproductive self is either not being told about?
Speaker 1:or not being exposed to this information about how this work, how reproduction works.
Speaker 3:Yeah, I think because, sort of referring back to what I was saying earlier about the requirement for women to repress their reproductive cells in order to be that kind of career woman which you know, and I don't want to say that you know I'm not blaming feminism here or the feminist, you know, the women's liberation movement, because I think that you know what happened was that the movements, efforts to sort of say that women had more choice than just motherhood, became kind of this being in the particularly kind of in the you know, like the neoliberal kind of. You know, greed is good 80s, that really like you should, only you should want that over being a mother, being a mother or that being, you know that sort of secondary, that really kind of becoming the career woman was the most important thing you do. And if you know, a number of women said that to me in their interviews. They said, like anybody can be a mother, anybody can have a baby, and again, it's that lack of real understanding about you know the fact that, not, you know that it's not as easy as just kind of stopping contraception, having unprotected sex, but that you know it was, it was devalued because it was innately feminine and it was an innately female trait to be able to have a child and therefore it's not as valuable as all of these other things that are kind of just so much more valued. You know society, so ambition and making money and being able to buy the big house and you know travel around the world and all of those sorts of things and that kind of like sense of your identity is being wrapped up in your work and your. You know your career and then you know so. So I mean a lot of these people, kind of they did.
Speaker 3:They experienced this big kind of identity shock that came with realising that parenthood wasn't going to come as easily as they'd expected it would, but it was also kind of ambivalent because it's like it wasn't going to happen that easily. And then also a realisation that it was so much more important to them than they had necessarily allowed themselves to think or to understand. So how did they adjust to that? And you know one of the participants sort of expressed that you know she worked so hard to allow herself to want to be a mother. Because it didn't.
Speaker 3:It went against all of the you know. It went against her upbringing, the schooling that she'd had, the narrative that she'd been fed of that. You know that you don't value that, don't prioritise that, and then it didn't happen and then you know. So you know where did that leave her, you know, with this sort of unresolved kind of desires, and it complicated for her her own understandings of what it means to be a woman and her identity as a woman, and that again was difficult. I think also there's sort of, you know, this kind of really strong kind of constant undercurrent of you know, this idea that childbearing is innately. You know that woman, being a woman and being able to bet children are kind of like innately connected and if you can't then you're not a real woman. That was definitely, and that's the idea of the broken body kind of concept that was expressed so regularly.
Speaker 2:I jumped to something that I was thinking about as I was reading your article, Shannon, about the sort of visibility of the woman without children and, and I guess, men's infertility right.
Speaker 2:So we tend to, you know, we ask women whether or not they have kids, which are perhaps less well. I don't actually. Ever, however, one is asked as a woman, if I have kids. I would think that it was very uncommon for men, particularly in a work situation, to be asked if they have kids, and I think I don't know statistics about what infertility you know what causes infertility in couples, but I feel like it's the women who are always the most visibly not mothers, rather than men being not fathers. So even if it, even if it is a, even if a woman doesn't have kids because she doesn't have a fertile male partner, she kind of carries that visible not having kids, and I'm not saying am I making any sense at all?
Speaker 3:Yeah, absolutely.
Speaker 2:Like, as I was reading your thing, I was like, yes, it can be very difficult to get pregnant, it's and the idea of the broken body, whereas it might not be your broken body.
Speaker 3:Yeah, yeah, that was that's. That's absolutely the case and I think I think I'm trying to remember off the top of my head, but the statistics are roughly equal for male and female fertility or infertility. And then also the unexplained, what's called idiopathic infertility, which is where they just don't know that all the there's a reason, but they haven't, you know, they're not able to identify what it is Is also sort of makes up about a third of people who seek out treatment. But, yes, women carry, women carry the visible signs of that infertility, of that lack of children, and also their bodies bear the the repercussions of it through treatment. So you know, women's bodies are treated for male infertility. Yeah, you know, through IVF, xe, which is where you know, or just IVF in general, that it's often still, that is still the go-to procedure for male factor infertility. So women, you know women do. They bear the responsibility for, for the, for finding a solution to men's infertility and they also take on a responsibility and I'm saying this because this is what the so many interviewees told me they take on a responsive responsibility for protecting their husband's masculinity from.
Speaker 3:You know, that is associated with infertility and there were plenty of women who, even though they were the ones so, their husbands were the reason that they might not be able to have children, or it was a combination of the two. First of all, they experienced assumptions from people that it was them, so they read their, their, their bodies, and second of all, they didn't challenge those assumptions because they felt that, yeah, but, but, and then also, as you were saying, many women found themselves being asked do you have children? If not, why not? When are you going to have children? Don't leave it too late.
Speaker 3:Those sorts of questions, but men did not get asked those questions. I didn't understand it. Yeah, yeah, and I think that sort of goes back to what I was saying before about you know how women's identities are, so are still so connected in our society to, to childbearing and to motherhood, which is which is why, even for women who are so reflexive and really sort of understand that they are so much more than that, it is such a kind of like a a crisis of identity. You know that, that sense of not fitting anymore into our societal expectations of being a woman.
Speaker 1:And that's something that I thought as well occurred to me during in reading your article just the this idea of the reproductive through time, that it doesn't also stop with, you know, the childbearing window. I think one of your participants talking about when then they became the sort of age where their peers were grandparents and then being asked about grandchildren and the way that that, I guess you know, grief morphed and, and you know, travels in different ways. I suppose it seemed quite, yeah, poignant to read, to read about that and to think about that, yeah, yeah.
Speaker 3:Yeah, the grief doesn't end with the stopping trying to conceive and it can. It sort of had it can even flow, I think, the women as they reflected on their lives and I interviewed quite a few women who were in their 60s and 70s who had never had children, and they were able to sort of reflect on the things that they had achieved because they didn't have children and the fullness of their lives in other ways. But that sadness is still there, it doesn't go away and and they're they're constantly again, you know, reminded of that in the way that they see women of their age portrayed in in our media, in the conversations they have, and in the way that there's often sort of a sense of, you know, not necessarily deliberate, but exclusion from their communities. And then, yeah, that's where that period of becoming grandparents is again a period of going through that sort of sense of sort of not being invited to things, not having to have conversations and connect with people, and the questions, the sort of the sense of the intrusiveness of those questions that are being asked and the expectations.
Speaker 3:And then the other thing as well is, you know that, this sense of who will look after me as I get older, who will remember me. It just it's sort of so pervasive, I think, and I mean, and that's maybe just an innate and human, human thing as well. You know, we, we have those, those desires for connection and the desire for a sort of meaningful relationships and probably a desire, you know, to have people who remember us when we're gone and there were. Yeah, I think the other thing is that, you know, familiar relationships also are really impacted by, you know, the women who felt that their relationship with their own parents, for instance, because they couldn't provide grandchildren, you know, there's just so many of these sorts of stories and, yeah, I sort of feel like it's really it's really sad, it's hard to talk about without kind of yeah it's a really the number of women who I who cried and yeah, in these interviews it was.
Speaker 3:It was a big emotional kind of labor that they went through. When I say that, I realise how often sort of the terminology of child bearing comes into our lives. You know the labor of this sort of work.
Speaker 1:And then to that emotional burden or labor is going back to what you were saying as well, I think, about the, the double silences, so the overarching silence, and that if that gets broken, then maybe that opens up the possibility for different ways of thinking about what it is to be a person, what it is to be a woman that you know not to be sort of a, not to offer some kind of false or gloob hope.
Speaker 1:but you know that with that silence broken down, then there is the possibility to talk about other ways of being a human, other ways of human connectedness, other ways of being remembered, other ways of community, but with the sort of pervasiveness of the biological family unit, the pervasiveness of who you are as dependent on who you've produced, and all of those sorts of things, then that would be, yeah, this silent burden that would be difficult to bear at times.
Speaker 3:Yeah, I think that's really true, chris. And yeah, we've just got such a long way to go still in kind of creating other narratives, even just around what families look like. There's still a lot of resistance, for instance, to, you know, family, the idea of family is not being the nuclear unit, and there are so many families that are different. Now I think that's changing. But yeah, yeah, and I mean, reproductive technologies have actually that's something we can kind of say this has opened up the possibility of parent hoarding of family to to perhaps people who might otherwise have really not had those opportunities as well. So, you know, it's about sort of separating out the technology and the opportunity that offers from the context in which it has been kind of used and regulated and the way it kind of feeds into really strong sort of dominant narratives around gender and family and our society.
Speaker 1:Unfortunately, I think we're going to have to wrap it up. There's so many more things I would love to talk about.
Speaker 2:I know Jane has got to.
Speaker 3:Yeah, it's gone so quickly I feel like I could keep talking to you.
Speaker 1:I mean, we'd have to have a two-part or maybe bring in, because, yeah, what you were saying earlier or just a moment ago about aging as well reminded me of a guest and friend of the show, lisa Mitchell, who talks a lot about ageism and you know the only what's an old woman in our society, it's a granny you know, which implies a lot of this stuff that you're talking about. Yes, thank you so much, Shannon.
Speaker 3:Thank you. Thanks so much, Chris and Jane. It's been a real pleasure.
Speaker 2:It's super interesting, thank you, thank you.