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S2: E9: Reproductive Justice: Why Miscarriage Care Must Center Marginalized Voices
142 Plays14 days ago
Show notes: S2 E10: Reproductive Justice: Why Miscarriage Care Must Centre Marginalized Voices
In this episode, Sam chats with the founder and executive director of the Early Pregnancy Loss Coalition (EPLC), Isy Oderberg who shares her personal journey through seven pregnancy losses which ultimately inspired her to write a book.
A key focus of the discussion is the central role of Reproductive Justice, a concept that combines reproductive health with social justice. Isy stresses that the work must embed diversity and be driven by centring marginalized people who experience compounded layers of disadvantage (intersectional disadvantage).
The conversation highlights that quality care extends beyond medical treatment and requires health providers and support services to recognize and allow for the trauma experienced by marginalized groups.
Despite the historical oversight of the sector, Sam and Isy agree on their immense hope due to recent successes and ongoing momentum:
- Policy Wins: The sector successfully advocated for and achieved the first ever dedicated miscarriage funding from the Australian government.
- Clinical Guidelines: They worked with RANZCOG to support the development and release of clinical guidelines for early pregnancy loss, a massive win that provides doctors with a standard for care.
- Future Research: The ultimate goal is to get medical research funded to identify new treatable factors in the recurrent miscarriage space, giving people more options and reducing the overall number of losses.
Isy concludes that the miscarriage sector acts as a "canary in the coal mine," offering broad lessons for improving how society talks about grief and addressing medical misogyny more generally. She believes the 1 in 4 statistic is a downplay and that every person will be touched by loss in some way.
EARLY PREGNANCY LOSS SUPPORT
If you or someone you know has experienced miscarriage or early pregnancy loss, please know you are not alone.
- For crisis support, please call Lifeline - 13 11 14.
- Access all our support
- Connect through Live Chat with Peer Support
- Join Online Communities
- Call out Pregnancy Loss helpline delivered by PANDA
- Join the Circle of support
- Follow @pinkelephantssupport on Instagram.
STACEY JUNE LEWIS
You can follow our host Stacey on her personal Instagram account where she shares some of her lived experience.
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Transcript
Introduction to Miscarriage Rebellion Podcast
00:00:04
Speaker
Welcome to the miscarriage rebellion. I am Stacey June Lewis, lead of the Pink Elephant Support Network group counseling program, Grief and Grace. And along with Pink Elephant's co-founder and CEO, Sam Payne, through this podcast, we will share the stories of many Australians who have lost their babies to early pregnancy loss.
00:00:21
Speaker
With evidence and empathy, we unpack the shame, blame and stigma and lack of support that they may face. This is a loss that has been silenced for far too long and we deserve better.
00:00:32
Speaker
We are here to normalise the conversation and to make lasting change.
Personal Experiences and Advocacy in Early Pregnancy Loss
00:00:36
Speaker
In this important chat, Sam chats with IC Odeberg, founder and executive director of the Early Pregnancy Loss Coalition, who shares how her personal journey through seven losses inspired her to fight for systematic change.
00:00:50
Speaker
The core of the conversation focuses on reproductive justice, while quality care must be driven by centering marginalised people who face intersexual disadvantage and trauma. IC and Sam celebrate huge wins for this sector, from securing the first dedicated miscarriage funding to establishing new clinical guidelines.
00:01:08
Speaker
And they both move into an explanation as to why this sector is acting as a canary in a coal mine, offering crucial lessons on how society talks about grief and medical misogyny. On today's Miscarriage Rebellion podcast, we are joined by Izzy. and Welcome, Izzy. Really excited to have you today.
00:01:25
Speaker
Thank you so much for having me. It's a great privilege. I'm happy to be here. Izzy is an incredible woman in the space of early pregnancy loss, doing amazing work to make some massive changes.
00:01:36
Speaker
And it's incredible pleasure to work alongside you in this sector and see the changes that you've driven. We're going to hear a little bit more about them today. But just to provide a bit of context to our listeners and our community, if you could just share a little bit about what brought you to the space of early pregnancy loss and why you authored this incredible book, Hard to
Multiple Miscarriages and Motivations for Writing a Book
00:01:55
Speaker
Birth. Thank you.
00:01:57
Speaker
So firstly, like I learned from the best and you are one of them. So thank you for that. And it's always a pleasure to collaborate with amazing women in any space, but this space in particular. um So where do I start? um i I met my husband. We decided to have a family, got pregnant for the first time in my life. um and And I had a miscarriage. um Sort of classic chromosomal abnormality early. i think I was about eight weeks missed miscarriage. um Waited a little while, tried again and got pregnant with twins, but unfortunately miscarried one twin. um But the other twin is my beautiful boy, um who's now nine years old. um, you know, got through the first time parenting and then decided we would like to have another child. So we started trying and that led to five losses in a row. Um, all my husband had to do was sneeze and I would get pregnant and just could not quite get past, uh, you know, the first trimester. And, you know, I had pretty much everything. I had missed miscarriages. I had miscarriages where I saw the heartbeat and just, it didn't work out. Um, I had a termination for medical reasons. You know, I really did spread my experience around ah all of the different options, so to speak, in this world. um And then I got pregnant with ah my daughter, who is now five.
Formation and Challenges of the Early Pregnancy Loss Coalition
00:03:20
Speaker
So I got my angel, five times rainbow, pot of gold, angel, beautiful, sweetheart. um and um And then once I had had, being a journalist and an author, I'd had a lot of people asking me to write about my experience. And I Never wanted to do it until I knew my journey was over because I felt like it was just very hard to write about that journey when you're in the journey and you needed to finish the journey to have the hindsight. So once my daughter was born, I decided to take maternity leave, as you do and you should um because it's a lot of a thing carrying a baby and having one. So um I sort of took some time off and I started doing some reading to answer some of my own questions um about my journey and just questions that I had, you know. And in doing that, i I sort of thought, well, maybe I'll write something about this. But the more I started reading and the more I talked to people, the more I found that there was a commonality in the appointments of care um that people were experiencing and also some really fascinating. fascinating answers to the questions and going, wow, like that is really interesting, you know. And unfortunately for me, realised that it wasn't an article or a feature. It was too much. It was going to be a book. And I had never wanted to write a book. And I was like, I have really severe ADHD. So the idea of writing anything beyond a long feature is like, oh my God, like overwhelming. So I went to my husband and I said, I think I should use my maternity leave to start working on this idea. And that's what I did. And then that transitioned into COVID. So, you know, I had a lot of time to sit around the house and research and write. um
00:05:00
Speaker
and um And I wrote my book. And one of the most important takeaways for me was that I looked at other areas of care that were also in the women's or female presenting health space, ah sorry, um you know, non-binary included and and and otherwise, gender diverse, but ultimately people with uteruses. And I started looking at, you know, some of the other issues like endometriosis. I looked at stillbirth. And the one thing that I found was that when these ah sectors, if you like, got together, and decided as a sector what they needed and prioritised it together and provided a collective voice to government that that's how change came about. And that was my contention in the book and that is always what I planned to do um and that's what I did. So the book was released and with two other co-founders, we founded the Early Pregnancy Loss Coalition um and I took over as, at the time I was chair and
00:06:02
Speaker
ah CEO and we've now ah sort of become more sophisticated and mature and decided we need a separate chair.
Equitable Healthcare Access and Reproductive Justice
00:06:10
Speaker
You know, like I talk about the Hunger Games of funding a lot and in especially in the women's health space, you know, everyone has been underfunded and everyone's been trying to stay afloat and it's heartbreaking and it creates trauma. Like, you know, it's about sitting everyone down and saying we are not in competition with each other. We are not. we actually can lift each other up and make space for each other and say, well, what's the point of us both doing X, Y, z when you could do that and I could do this. And then we're not in competition sort of thing. And it, it's so important to start healing that trauma and working together, you know, and and I really, really hope that that has been done as well. Yeah, massively. I think it also increases choice for the person who's trying to, act if it's from a support perspective as well, because not one size fits all. I use this menial example all the time, but you do your food shop and you choose Harris Farm, Aldi, Coles, it's choice, right? It doesn't matter, it's a food shop.
00:07:08
Speaker
yeah However, you lose a baby and there's only one organisation that offers this type of service. There should be multiple. And then also the other thing, the systemic change around that needs to be considered from multiple angles as well. Totally agree. So, yeah.
00:07:22
Speaker
Yeah. And it's funny because, you know, like obviously I spoke to a few different people who worked for similar coalitions in in setting up because I was like, what works, what doesn't work? I haven't done this before. And like, I think there was a lot of warnings to me about, you know, if it falls apart, which it has done in other spaces, it can be very painful and very time consuming and whatever. But like, honestly, i am shocked in a good way that honestly, we're we're all like really on the same page. Like we all know what is needed. There hasn't been a lot of um disputes or debates or, you know, um kind of um friction. It's just, you know, everyone knows really what we need and everyone's on board. So it's been,
00:08:08
Speaker
very a lot less of the umpiring that I thought I'd have to do and it's a place like a joy and and and the great thing you know in ah in a sort of black comedy way about um working in a space that's had so little love it's that we have wins all the time and it's like super amazing you know um so that's like super positive as well like it's how it gives you hope because it's like we haven't had a win in a couple of weeks. Let's just do something to... And something will come from it, yeah. And there's definitely a shift. There's definitely a shift. There is more attention on the pregnancy loss miscarriage now. I've had 10 years and that that's exciting. I want to pull us back before we get to the kind of what next and the hope stage. I just want to pull us back to what came from your book. Like drill down a little bit and talk me through um some of the kind of diverse voices that you... reached out to, interviewed in your book, what are their experiences of early pregnancy? How is it even harder for them to walk through a system that obviously you've got medical misogyny from the gender perspective. And then on top of that, if you're a woman of colour and you come from a different cultural background, what what does that mean for you?
Diverse Experiences and Systemic Healthcare Obstacles
00:09:12
Speaker
So I guess um what's interesting just to just to sort of give a little bit of background is When I started writing the book, I have a a writer's group, which a lot of people do have. But I started writing the book and I sort of had the chapters and one chapter was about diversity and challenge. And immediately a few of the people in my writing group who identify as being from diverse background were like, you can't do that. You cannot relegate it to one chapter.
00:09:38
Speaker
Has to be all the way through. Has to be embedded. And I thought about it and I thought, you are absolutely right. And I scrapped the entire book and I started again. And I really do feel, well, when I say entire book, I was about three chapters in, but um but I did. And and I think that that was incredibly important and I never regret it for a minute. I think absolutely it was really important feedback. And the only thing that I did do was there is a separate chapter about Aboriginal experience because I felt it was so important that that not only is there um the experience of Aboriginal people the whole way through the book, that also got its own chapter. I think it more important, given that I wrote the book on stolen land. um so But for that, I got a lead author who is Aboriginal, who is a trained midwife, who worked on Birthing on Country and who also has had losses. And it was very important to me that I not lead the chapter of that book, that someone else lead it and that I just support um that person. And that was Sharice Buzzacott, who remains a friend, is sits on the board of the EPLC now and is phenomenal. um But, you know, we, we we um it was, I think as well, I got very deep into the reproductive justice movement. And there are a lot of fundamental misunderstandings about reproductive justice. Reproductive justice is not just abortion. It's about reproductive health and social justice. It's a combination of the two, It's a concept that was defined and expanded on by American civil rights activists and Loretta Ross and and and others. um But what the whole, and and I will leave the listeners to go and read about reproductive justice, which I highly encourage them to do, but the fundamental basis of reproductive justice is it's about intersectional disadvantage which intersectionality which is layers of disadvantage and how they affect someone's experience and specifically in reproductive health and health care but also you must center marginalized people at the center so
00:11:44
Speaker
um It's a top down, trickle down, change doesn't work. It has to come from them, for them and from them first. So in the book, I speak to a range of different people, gender diverse, you know, LGBTIQ plus, Aboriginal, um people with a disability, um a range of those people to understand how those layers of disadvantage um affect their care. And there's zero question because the data tells us so but also because the people tell us so um that people who have that disadvantage experience ah much ah you know much more disappointing care and in some cases you know really, really substandard care. um And reproductive justice, importantly in the loss space, is not just about access to contraception. It's actually about the ability of people to have and safely parent children.
00:12:44
Speaker
I was speaking to an Aboriginal doctor who was treating an Aboriginal patient and this Aboriginal patient had experienced a lot of things that people from marginalised communities do experience, so you know, ah suboptimal sexual health, previous pelvic inflammatory disease and severe endometriosis. And this person was actually in their late 40s by the time ah this doctor saw them and they said, so throughout your health journey were you ever offered IVF? And this patient said no. I was never offered IVF because, you know, i think they assumed I couldn't pay for it. And that is a problem. Putting aside the fact that IVF is so expensive that it excludes a lot of patients, um beyond that, this patient was never even offered that as an option, right, because of racism, because treating doctors assumed that they couldn't pay for it. um
00:13:36
Speaker
That's the the essence of reproductive justice is that all choices should be available to all people. but more so for people from marginalised communities who are more likely to experience adverse outcomes. um So understanding that and understanding those challenges is like really key to good care.
00:13:55
Speaker
Yeah, 100%. And it's access to healthcare, right,
Culturally Appropriate Support and New Clinical Guidelines
00:13:59
Speaker
that should be equitable and it's not happening equitably at all. And you talk about the reproductive side of things and IVF yeah and absolutely most IVF yeah clinics are private equity owned now and obviously the issues that arise from that and obviously the fees, all of those things and how we add layers and there's just so much work still to be done alongside this as well in that space.
00:14:19
Speaker
i mean... And I think in the support space, which is particularly relevant, I think, to people pink elephants and to you I had a very interesting story about a same sex couple both female and female identifying um one partner um had had several losses and made the decision that ah she would wanted the other partner to then try um the other partner tried got pregnant um advanced stage of the pregnancy and they went to a ah you know, like a Lamaze, you call it? Like pre-birth classes. i think
00:14:54
Speaker
And they said, birthing classes, that's what I'm trying to say in English. and um And they were told, you know, okay, so now I want you all, including the partner, the non-birthing partner, to pretend that you're pregnant and start going, you know, and whatever. And and this person had experienced multiple losses and was just incredibly pained and traumatised by that process. And it had never occurred to the the leader of this of this birthing class, which by the way was not um specifically targeted LGBTIQ+, that this female non-birthing partner may have experienced loss. And that's just an example of like, how does this person who comes from a marginalised group have potentially a different experience? How can I allow for any trauma they may have experienced? And and it's
00:15:41
Speaker
You know, from a support point of view, it's just as important as the medical care. And you know this. I know you know this. But a lot of people don't, you know. And it's and it's about having those conversations, you know. It's also about empowering providers of services and support and health professionals who touch women anywhere in the health system to stop, the power to stop, to pause, to think,
00:16:05
Speaker
before they deliver. And I don't think that happens in such a broken healthcare system because the pressure that they're under to provide and the rates and things like that, you hear obviously all the emergency stories and we've got a whole podcast episode on that with Sophie, who's our service delivery manager. And you just, the system itself is stacked against them. So what we're not saying is, hey, you're doing this wrong.
00:16:26
Speaker
You're a terrible person. You haven't considered this. What we're saying is actually we need systemic change that will not only drive benefits for the pregnancy loss sector, it'll drive benefits for all of the healthcare sector, right? Giving that to just stop and consider. I know even from Pink Elephant's perspective, we're often asked, why don't you translate your resources into X number of languages? And I'm like, because that's not culturally appropriate.
00:16:48
Speaker
because Yes. the me more than just translations of google translate oh yeah yeah and it's frustrating because why are we still having these conversations in 2025 why don't people think about this and yeah so we're doing some work with other organizations like east africa as well they're driving their own early pregnancy loss support and we're going to try and amplify it and help them get more reach they should drive this support that their community need to your point before what's really interesting is like that you know this transition to a sort of midwifery kind midwifery group care model where you've got that sort of, um you know, continuity of care in the public system, which is particularly relevant for people who've conceived after loss. And what's really interesting is is that was set up to to take care of, um you know, high needs patients who who really, really could benefit from um continuity of care. Now, I would put Aboriginal patients in that, you know, ah in that a lot of them have experienced medical trauma, they've been treated in a substandard way in hospital systems. They're very often, not everyone, but a lot of Aboriginal patients are scared of seeking care in the hospital system for a variety of reasons. um And what is interesting is that, you know, a lot of those um services are really being accessed by the patients who don't need it because they're educated and articulate and they know how to access them. They're aware of them and they know how to access them and advocate for them. And It's it's really, really disappointing. And it's like, oh, well, you know Aboriginal women aren't approaching us and asking to be part of this service. And it's like, why do you think that is? Because because they don't know about it because they haven't been told about it, because they don't know how to, you know, they they aren't necessarily going to, you know, articulate themselves in an environment and where they're terrified because they've been treated really badly or like, you know, tell me why you think they're not accessing the service that might actually help them, you know. So it's it's it's very disappointing that
00:18:37
Speaker
You know, we we talk about it a lot, but I'm not sure in practice that it is necessarily, um you know, put in put in put into
Impact of New Guidelines and Cultural Shift in Healthcare
00:18:46
Speaker
day to day. Yeah, it's not translated. I think that leads us quite nicely to another intersection, which is the guidelines. Because...
00:18:53
Speaker
and excitingly EPLC i worked with Ransgog on these new guidelines for early pregnancy care but again one of the things that cook come sometimes pushes back against guidelines is well how do we then roll them out so they actually play out in everyday care and then not get another guidelines that sit somewhere on a system but take us back first talk us about these guidelines and we are going to obviously bring Nisha Cot on as well to talk about these but talk about the role that EPLC paid and what your hopes are for these guidelines I think You know, with the work of the EPLC, I suspect that it potentially added to those voices and encouraged it. So, um you know, we're very, very, very happy that they've been done. We think there's always room for improvement and all clinical guidelines will, you know, as they should be consistently reviewed.
00:19:39
Speaker
Every few years we'll we'll work again with RANSCOG. But in terms of like we now have guidelines for the first time, it is 100% positive development. um And so the guidelines were developed by a clinical group um within RANSCOG um or set up by RANSCOG. And um we then worked with that group to provide feedback and and, you know, whatever we could to support it. We then very much supported the release of the guidelines so that to push that to doctors and medical professionals so that, you know, um that they were as widely known about as possible.
00:20:15
Speaker
um It takes a very, very long time when it comes to new medical research for it to work its way from, and i mean, this isn't a piece of research, it's a guideline, but ultimately it's a similar thing, to make its way from being a piece of paper to being used in in the consulting room. And all we can do is keep talking about it and keep talking about it, keep doing podcasts like this, keep doing articles in the paper, keep, you know, agreeing to do anything that Ranskog wants us to do. in order to promote this at conferences or anything else. I i recently came back from a RANSCOG conference in Queensland where I talked about the guidelines, but there was also a doctor there who took spoke spoke more specifically. um But I spoke about the UPLC, the guidelines, some of the wins that we've had. and you know, anything that we can do to support getting that out there, um you know, is great. I think patients also, you know, wear comfortable and and it is about comfort level. But if they, you know, feel they've had, you know, optimal care, they can read the guidelines as well. They're freely available and say, well, what do the guidelines say? You know um the guidelines are not designed for patients, but they certainly are available if that's something that you want to do. and want to understand. um So yeah, i we just have to keep talking and talking and talking and pushing and pushing and, you know, cultural change is slow, but we've proven it can be done. Yeah. And I think it's things like the language around things like recurrent pregnancy loss,
00:21:44
Speaker
the language around medication choices, after loss, all of those things, the progesterone argument that's in there. And we'll get, obviously, Dr. Nisha to unpack those from a medical perspective. But to your point, what they do is they allow our community somewhere to read. And then if their health professionals are up to that level yet, they can go, hey, but these guidelines say this. and they can have a conversation with a healthcare professional and feel, and don't like the word empowered, but I'm going to use it here because it says they're disempowered already, but you know what it's like when you're in this yeahp fight or flight, you're desperate for another baby, you're struggling to conceive again, you're not sure why this keeps happening to you, and looking for information, and being told differently by different people, these guidelines allow you to find some information that you know is evidence-based.
00:22:27
Speaker
And I think that's something that's really important for our community because we do see This is a topic that's heavily searched on social media. And um whilst some information is correct, others is maybe driving you down the line of something completely random, right? And you know this because you run these support groups online. And, like, you know, there are definitely support groups that aren't moderated and aren't, you know, watched. And I think that when you're in the middle of loss, you want to be around other people who've had losses. It's really intrinsically embedded in you.
00:22:58
Speaker
Oh, my gosh. Like, this is the thing is, like, while... you know, miscarriage brings grief and sadness to so many people. And I and i have to emphasize, not everyone who experiences miscarriage has heavy grief and whatever, but to a lot of people it it is. It's a lot of grief and it's lot sadness. But the thing about a sector that's been overlooked and ignored for so long is there is so much that we can do from low-hanging fruit that we can do tomorrow to big picture stuff and there is so much improvement that we can make. and And while that might sometimes feel overwhelming in the sense that like some of these things are really big projects, um it gives me so much hope because there's so much we can do. i mean, in 20 years, when we do this podcast again and we look back,
00:23:42
Speaker
um at the the dark days when miscarriage wasn't understood and, you know, whatever. um Like if nothing has changed, I would be, you know, really, really sad. But I suspect that it will because we've already seen the change happening. And that brings me so much hope because we've only just started, like we've only done one millionth of the things that we want to you know. And so once we get going and we've done 50% of the things we want to do, i think we'll be looking at a totally new new landscape, both in terms of, how people are treated, the support that they get, the medical care that they receive because we're going to get medical research funded and you know potentially reduce the number of of losses. We'll never get rid of the number we'll never get rid of losses completely. The way the human body is built, they are always going to happen. But it is my belief that there are some losses that if we can identify the cause earlier on that there are potential treatments that that
Advocating for Collaboration in Healthcare Sectors
00:24:38
Speaker
we can use. And we've seen this in some of the research that's coming online, for instance, about, you know, endometrial lining and things like that. There is not not, by no means is it a done deal, but there's a lot, a lot of hope and a lot of optimism that we've identified new factors um that can be treated. So, you know, especially in the recurrent miscarriage space um to give people hope, you know, i am not in any way lacking in hope.
00:25:03
Speaker
I really, really am not. Sometimes I feel very tired and overwhelmed But I'm very, very hopeful ah going forward. it So there's a difference, you know. yeah Yes, there is. And I completely, completely agree. Even in the 10 years we've been in this space, just there was felt like such a distinct lack of research in the first part of this. And now that is changing. And now then there's up to organisations to kind of amplify it and to turn it into meaningful service delivery. to advocate for the policy change that needs to happen. And all together then the system becomes a different system to what it is now and we will start to foster more empathy and understanding to what this is for many people, the death of their baby.
00:25:42
Speaker
But then have system that does not add trauma when they do not need added trauma on top of what is already an incredibly emotionally distressing time for many. And as you said, not all, but I know that the majority it is. That's the thing. and i think And I think that the other thing is like, you know,
00:26:00
Speaker
I really still don't think that there is a full and complete understanding of how many people are affected by loss. I think that for starters, it is my personal belief and I make this contention in the book, although there is some data to support this contention, but you know data, you can make any contention seem okay if you mix it the right way. But personally, i personally believe that the one in four number is a downplay. of how many people experience loss. And I also believe that those numbers are going up based on ah anecdotal evidence, but also some data that comes out of America. So you know, think that we really don't have a full and complete picture of really how many people are experiencing it in Australia every year. But what I do know is that when I go ah to events where I'm speaking, I will sometimes say, and i as I did last week, actually, i said, so, you know, how many people in this room have had, know someone close to them who has had, or know someone they work with closely who has had, an early pregnancy loss, and there was not a single person in that room who didn't put up their hand. So we are all going to be touched by it in some way at some point. Even if we don't directly experience it, our family will experience it, our children, our workmates, our friends, our peer groups, whatever, you are going to you're going to come into contact with it at some point in some way.
00:27:40
Speaker
Right. where Everyone needs to understand what it's like, what we need, what they can do. It's not just, it's almost like what I talk about as well is that you kind of would never expect to survivor of domestic violence to advocate for themselves, to say, this is what's happening to me. No, you shouldn't say that to me. Say this way. Oh, that's not okay. Similarly with someone who's going through cancer, you wouldn't expect them to tell you this is happening. I need this, da, da, da, and kind of they have to hold space for you as well in these conversations often with early pregnancy loss where they're minimized by people trying to find the silver lining with the at least statements. And then they're trying to educate you and also manage their own grief.
00:28:18
Speaker
This is one of the only places that this happens and it's not good enough, right? Like you said, if everyone's going to be touched by this, then everyone has a responsibility and a role to play to understand what they can do for those people that they know and potentially themselves who will go through this.
00:28:35
Speaker
And I think that there is a wider piece here, which I do try to cover in the book, which I think I did. You know, I like my book. um But i I think I did, which is, you know, more generally, even what can we learn from this space about how to talk to people about grief more generally? Yes. What can we learn from this space about medical misogyny more generally and how...
00:28:57
Speaker
female patients are spoken to about their care or birthing people are spoken to about their care or, you know what does that teach us more broadly? um And I think there's a lot, a lot of lessons. I think to some extent I sort of do see the miscarriage sector as a ah so a bit of a canary in the coal mine for a few years. different issues um and you know ah people say to me you know when I when I do media especially when the book was released and I was doing a lot of media why are we so bad about talking about miscarriage I should say and then I say well we're just not very good about talking about grief full stop right um and I think we could learn a lot even more broadly when you and I are doing educational media and talking about how do you talk to someone when they've had a miscarriage
00:29:44
Speaker
Some of those lessons can be implemented much more broadly than just in with people who've experienced loss. So, you know, I think we have a lot to to give this sector and these people and these advocates that we work with. And I'm so proud. Like i always lose the words to say how proud I am to work with the people I work with. um including you and and all of our members, because without the members, the coalition doesn't work or exist. um But, you know, I think we have a lot to offer beyond just miscarriage. That's my personal view. And and i and i and I stick by it. And I agree with you, Izzy. I absolutely agree. And I think also one of the profound things that I learned through my personal experience is, it's not a silver lining, but how much more nuance and gray I get to see now.
00:30:33
Speaker
I didn't see before my losses. I hadn't been touched by any type of loss really before. And that definitely gave me that gift. And it's left me with an ability to have a look at different perspectives on different things. And that, like you said, that ripples out broader than just early pregnancy loss. yeah And I think that that's something that all of our community, once they've come through that point of kind of not getting through it because it's not a journey, but you know what I mean, where you can stop and maybe pause.
00:31:00
Speaker
A lot of women do acknowledge to us that they feel that sense of, okay, well, it's it's shifted my perspective on a lot of things now. And that's nu less that's a good thing, right? it's not a bad thing. Yeah, I absolutely agree. And I also think that we as a sector have a responsibility to collaborate with people some of other spaces that affect us and also that we can just support because it's important to do so.
Benefits of Collaborative Efforts in Healthcare
00:31:24
Speaker
And like examples of that would be stillbirth, would be um the abortion and choice lobby um because, you know, a lot of us have experienced termination for medical reasons. um I also think the endometriosis lobby is really important. I mean, you know, i I actually put a press release out when we won our funding, which was the first ever miscarriage funding for Australia um ever dedicated miscarriage I mean that is that was a huge emotional win for the sector because what it's while it wasn't enough to fix any you know everything it was such a healthy start but it was also a message that we matter now and we are important now and you know anyway um what I what I you know noticed is I sent a press release and in the press release I said you know we also want to uh congratulate the endometriosis sector for getting this additional funding for pain clinics and a few people said to me why are you talking about the endometriosis lobby in the press release like with a miscarriage lobby you know and i said because if you can't see beyond that we are related and that a win for endo is a win for us because a lot of endometriosis patients have miscarriages thought to be related to the endometriosis like if you can't see that a win for them is a win for us i can't help you yeah i can't i'm sorry i can't help you like It is absolutely, you know, not yeah again coming back that all interw woen right we are all interwoven. all interwoven and together we are stronger and it is so important. And, you know, I say a lot that the stillbirth, you know, sector has been given a lot of resourcing, a lot of help, a lot of assistance, and they have, but that's because they asked for it. I don't resent them and they weren't not deserving. That issue was not not deserving of it. But, you know, we are trying to catch up.
00:33:11
Speaker
coincidentally the stillbirth lobby and the still but people working in the stillbirth space the people at the cre uh in brisbane um could not have been more supportive yes more collaborative more helpful you know just because i say stillbirth had this much resourcing it's time for us to get resourced i'm not saying take it away from them and give it to them i'm saying you have a duty of care now you've shown what can be done in this space Now we need to do it in this space as well. Yeah, exactly. And we've said the same in terms of funding frontline services.
00:33:43
Speaker
We don't want money taken away from, say, Red Nose and Panda. If anything, we're looking to see how we can not reinvent services that exist and make them more inclusive for the early pregnancy loss needs. So, for example, the collaboration with the Panda phone line is a great example of that. let's kind of get smarter let's work together and not duplicate yes there's no need to do that we're all under resource we're all struggling to meet the demands so if we can be smarter about how we do things together for the and always remember it's not about us it's not about our brands it's not about our services it's actually about the person today who's going through this experience who needs it to be different who needs to be met with validation, empathy, connection.
00:34:23
Speaker
That's what matters. And does it matter whether that's this service or that service that adds that? Is it this hospital or that e-pass? No, it shouldn't matter. It should be the same, right?
Conclusion and Support Resources
00:34:33
Speaker
Well, we need to be looking at those end results and going, right, so we need a phone service and we need a phone service for this, this, you know, this is what we want it to achieve. This is what we want it to look like.
00:34:43
Speaker
you know, there are gaps here in in what we can do. Who can help us fill that? Oh, Panda. Panda can help us fill those gaps. Now it's going to be better for the service. It's a collaboration. We've got the best areas of expertise. I mean, this is what the coalition, I mean, not to say that the coalition was involved in that. We were not, but we were very supportive of it. But like, this is what the coalition aims to do is that if we bring those people together, they can go off and say, yeah We were talking about in that member meeting, can we have a chat because we're doing something great. Like we don't need to facilitate it. Thank you. Thank I really appreciate it. The difference that it will make. and It's been a a needed voice for a long time. So I'm grateful for you for all your work as well. and and Thank you so, so much.
00:35:28
Speaker
It's always a pleasure to talk to you. i am such a fan of your work as well and I will see you in the next member meeting. Awesome. Today's episode may have brought up some feelings that you need some extra support around and that's totally okay.
00:35:43
Speaker
Head to pinkalifants.org.au to access our circle of support, your space where you can be met with empathy and support through all of your experiences of early pregnancy loss. We're here for you.
00:35:55
Speaker
You're not alone.