Undisciplinary

Intersex rights, medical norms & celebrating difference - talking with Morgan Carpenter

• Season 1 • Episode 8

Share episode

Send us a text

In this episode we talk with Morgan Carpenter, a bioethicist and co-executive director of Intersex Human Rights Australia. We discuss Intersex rights, the power of medical language, diagnosis and interventions, and the intersectional politics and ethics of the Intersex community.  

**Click to read about the Intersex Flag**

References

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

Morgan Carpenter: So what I would mean by, by intersex people and people born with sex characteristics that don't fit medical norms for what it means to have a female body or a male body.

And there are many different ways in which sex characteristics can vary, because we could be talking about sex chromosomes or we could be talking about, prenatal or early hormone profiles…

 

…

 

Christopher Mayes: Welcome to Undisciplinary, a podcast where we're talking across the boundaries of history ethics and the politics of health. Today we are recording today on the unceded land of the Wathaurong and Wurundjeri peoples of the Kulin Nation in Geelong and Melbourne. 

 

And I, I am Chris Mayes, and I'm joined by my co host, Courtney Hempton.

 

Courtney Hempton: Hi. I love that you had had to think, pause to think about your name. 

 

Christopher Mayes: Well, I often forget to actually introduce myself so, you know, I know that our listeners are wondering, who is this person?

What are we talking about today, Courtney, and who are we talking with?

 

Courtney Hempton: So today we're talking about some issues related to intersex bodies. So in terms of history, ethics, and politics, and we are joined by Morgan Carpenter.

Morgan Carpenter is a bioethicist, advocate, and consultant on bodily diversity issues, a Justice of the Peace in NSW, and a graduate and PhD candidate in bioethics at Sydney Health Ethics, at the University of Sydney. An intersex man, Morgan is a co-executive director of Intersex Human Rights Australia, founder of the Intersex Day project and creator of the intersex flag. Current roles include membership of an Australian Human Rights Commission expert group on protecting the human rights of people born with variations of sex characteristics in the context of medical interventions. So Morgan, welcome to Undisciplinary.

 

Morgan Carpenter: Thanks very much, Courtney. It's great to be here. Thank you both.

 

Christopher Mayes: Yeah, it's great to have you.

 

Courtney Hempton: And so we usually start by, I guess, asking our guests to kind of reflect on their, background, which is usually interdisciplinary, or Undisciplinary as we, we tend to refer to it. So I guess if you just want to expand, and I'm certainly curious about the role that you play in terms of both your academic work but also your, the active role that you take in systemic advocacy around legislation, regulation, clinical reform, as well as your research and teaching in areas of bioethics, intersex health and wellbeing, and gender and sexuality.

 

Morgan Carpenter: Yeah, there's a lot of different terms or, different disciplines in there. So yes, I think, I mean as an individual, I have a background in other fields. I mean, I initially trained in urban and regional planning and economic development, back in the 80s and 90s, the last millennium, and subsequently retrained in information technology. And then I retrained again in bioethics, at a point in my life where I had encountered an intersex community, which meant that I found other people with some of the lived experiences to me, and the bioethics course at Sydney University helped me to understand far more about how medicine works, and why it has worked in the way it has and, and I think that that in itself, encountering an intersex community and doing that course and, are part of an engagement with, with an advocacy role, that some people would see us and conflict with being a bioethicist but, but I wouldn't see them as in conflict. Yeah, so my work day to day is both research and the context of bioethics because of my PhD studies but, but I'm also working part time as an advocate on intersex human rights and health issues, and the two, to my mind, are very closely interconnected. And we could talk about if you'd like. 

But I think there's more interesting questions are about how advocacy relates to bioethics itself. So these are often posed as if they are two very different things that are in conflict with each other.

 

Christopher Mayes: How have you experienced that?

 

Morgan Carpenter: Well yeah, I mean, I think when I'm talking with clinicians, they perceive me as an advocate and not a bioethicist. But I, in my view, the kind of work that I do as a bioethicist or as an advocate is quite similar in the sense that good advocacy is not arbitrary – it has goals that are meaningful. And if advocacy is to be effective, it will rely on some of the same things that people argue are important in bioethics, so it will rely on evidence, and it will rely on sound arguments and careful reasoning, and it might also be nuanced as well. But, but maybe some of the methods of different, maybe some of the audiences are different, because you know I'm typically talking to people in institutions outside medicine.

Yeah, so, I mean, to me, I think maybe advocacy is what happens when bioethics fails. What I mean is, when bioethics fails to achieve outcomes that are grounded in evidence, or outcomes that disregard fundamental human rights and norms.

 

Christopher Mayes: Yeah, that's a, that's a fascinating way to think about it. Um, also because, I think, you know, so we're working on this history of bioethics project, and I think part of the history and the emergence of bioethics could be seen, like what you're saying, that there was a failure or a crisis in certain areas of medical practice that then led to a more advocacy role of certain, you know the time they weren't really called bioethicists, that we're sort of trying to address medical power or, or however it may be conceived, things that were happening without much input from others, so patient rights movements and those, those approaches. And maybe, yes, now that bioethics has become part of medical schools and medical establishments, there's not always an easy avenue, or an appreciated avenue perhaps, to draw attention to some things from within, and you need to go outside or take a more activist approach. I don't know if that's been your observation or experience?

 

Morgan Carpenter: Yeah, I mean I think that, what you're kind of describing to me, I mean, might be that I kind of a distinction between being an outsider or an insider. And the first people perhaps involved in clinical ethics or raising, well, I don't know, I mean it what you're describing about the origins of bioethics, I mean, do they go back as far as you know the the Nuremberg trials and the discussions there about the role of conditions and medicine in, in Nazi Germany, or really go back to, to the Tuskegee…

 

Christopher Mayes: Syphilis trials 

 

Morgan Carpenter: … you know the history of ideas in in medicine, ethical failures, that in some ways, led to the establishment of the human rights system. As well as, you know, the establishment of a discipline of bioethics. But a lot of what we talked about, I think in terms of the ethics of medicine, go back, go back before the establishment of bioethics. So I would be interested, I don't know enough about the origins of early bioethics, I mean it was something to be studied in quite a superficial way, or in quite a brief way as part of the Master of Bioethics program, but I guess it's not where my interest lies, so I'm kind of interested in in what, yeah, I’m interested in what you, what you might have to say, if you know anything, about how the how early bioethics might have related to, you know, other other kind normative frameworks about, about or human lives. Is the much there, or has ethics be seen as being something discreet, that comes in without raising any questions about human rights, or norms, or…

 

Christopher Mayes: No, I mean, I think, you know, it all depends on the different phases, and where, so I would see bioethics as emerging in different specific local contexts. So in Australia, while it's obviously part of a global conversation, I think bioethics in the context of Australia occurred a lot more around reproductive medicine, and reproductive ethics in the 80s, in the wake of IVF technologies and those sorts of things. Obviously there was medical ethics discussions going on prior to that. In America, I think there was a much more focus on health law and a patient’s rights focus. I mean, this is something we can talk maybe about in the context of some of your work, and the advocacy around intersex rights, because I think America has a long tradition of rights discourse, and you know, they have a bill of rights, and some would argue that this comes down to the period in which America was colonised, and the influence of say John Locke, whereas Australia has much more of, a less of a rights framework, so, you know, Indigenous rights, women's rights, rights not to be conscripted those sorts of things never really have stuck in Australian legal infrastructure in protecting, protecting people in the same way that they have been powerfully mobilised, say in the US. And perhaps that's got to do with Australia's, the period in which colonisation occurred here, and the influence of Jeremy Bentham and John Stuart Mill, and a more utilitarian, pragmatic approach. But I also recognise that we're getting way into a different area than we may want to be talking about, but yeah, I certainly think in terms of the history of bioethics, whether you know just generally, there has been a certainly an element, a gadfly element of critiquing medicine, both from without, and within, and using whether rights frameworks or, you know, maybe more understanding in terms of medical power. Or like what Ivan Illich talked about with medical nemesis, and the control and medicalisation of society.

 

Morgan Carpenter: Yeah. I think I certainly do struggle with this idea of the inside or outside of where I fit in there, I guess, I have been put in a position with being an outsider, even though I might have studied bioethics, and even though I am still studying bioethics and doing PhD in the discipline, you know that's, that's part of, of ethics. I think that the way medical authority works, well, actually I think there are many different issues here. I think that there was a kind of a self, that the medical models and ideologies and medicine are kind of self-reinforcing, that the senior management in the very small centres that engage in, what of what I would term human rights violations against intersex people, and what the human rights system would regard as human rights violations against intersex people, is self-reinforcing, in the sense that the senior management recruit people with similar beliefs and enforce a particular kind of model of treatment, and people who do not conform to those norms either don't get their contracts renewed, don't get recruited in the first place, and may find that in a country like Australia or region like Australia, New Zealand, very few career options on to them if they speak up. So, so I never going to be employed by a hospital system or health department or ministry, and I and I, I’m put in a position of being an outsider, because I dispute key aspects of the way that the children and adults are treated. 

And so that is a situation of being an outsider, in some ways that's kind of mirrored by the experience, I think many intersex people in society more generally, where there are multiple different ideas about who intersex people might be and, but most of those different ideas, lots of those incommensurate ideas, frame intersex people as outsiders. So I think on the one hand, there is this idea, a very much identity-focused idea that intersex people comprise a third sex, and that idea is prevalent, I think an LGBT spaces. And and it's one, that it's an idea that because it doesn't match the reality for most people with intersex variations, means that intersex people are not visible in many of those LGBT spaces. So I think what you see is a situation where the invisibility of intersex people in LGBT spaces is perpetuated by our existence as a kind of a, a model of why sex is not binary, that serves a purpose of justifying the rights of other populations and, and in medicine intersex people who speak up about treatment, often the basis of the treatment that we've received, are dismissed as a disgruntled few, or people that have suffered from historic practices that are no longer current, and that there's no evidence to support either of those two claims. But I think, you know, in each of these contexts, I think we can see how intersex people serve as a, as a kind of an outsider. Yeah, so I struggled with that, I struggle with that continually, and trying to engage with institutions as an outsider is perhaps the key characteristic that makes me an advocate, more than a bioethicist perhaps, sometimes. I'm not sure if that's make any sense.

 

Christopher Mayes: No, no, it's very interesting.

 

Morgan Carpenter: And we touched on this idea about who intersex people are, and I think it's kind of helpful to talk more about that – what, what do I mean, in a context where what it means to be intersex is contested and understood very differently in different spheres or different parts of the broader community. So what I would mean by, by intersex people and people born with sex characteristics that don't fit medical norms for what it means to have a female body or a male body, and there are many different ways in which sex characteristics can vary, because we could be talking about sex chromosomes, or we could be talking about, prenatal or early hormone profiles, that that mean the body develops differently, we could be talking about anatomical differences or gonadal differences. And each of those can mean that people have quite different lived experience, but the lived experience of intersex people are typically about an experience of nonconformity with expectations about how a body should look or appear or function and, and because of those differences people are risk of stigmatisation, discrimination, and harmful practices. So that's kind of like, a kind of a human rights model of who intersex people are. 

But there's also the medical model, and the medical model is actually very similar, in the sense that there is this term constructed in 2006 that constructs people with atypical sex development is having ‘disorders of sex development.’ So that’s a medical model that says that, because your body is different, or develops differently, that you have a disorder, and then that promotes ideas that bodies can be fixed or finished or completed. 

And you may of, you can observe some about discourse in a very recent video debate between two paediatric surgeons at the Royal Children's Hospital in Melbourne, and the clinical ethicist, and myself, where, where, where, you know, clinicians, many of them many, many senior clinicians are very comfortable with that language about fixing children's bodies. And they are the clinicians that do that. Or seek to do that. So I think very much that the definitions and the models are not simply terminological differences. They also offer insights into ideas about how people should be treated.

 

Christopher Mayes: That, that brings up a whole series of different questions, and we watched that video sort of earlier and it was, you know, there's lots of fascinating things to, and perhaps disturbing things, to pick up on that, but just on that, that point about fixing, and language, and terminology. I think that, it's, in describing something as a disorder or abnormal, there's this, the normativity of medicine is then to fix it. And its sort of presupposed in the language that, even if there is not a solution, we're going to try to do something, and I think just, you know, so in some my other work on obesity and critical analyses of obesity, of medicine around body and weight, there are some similarities in these spaces with I think defining a narrow range of what is normal, and then everything outside of that needs some kind of intervention. And then I think the, the difficulty of bringing up a critique of those interventions is not only because people just think that this is a good, this is the normal thing, and of course we would want to fix this, but then I think people whose whole career has been based on this fixing, have a lot, and a whole profession, have a lot of investment in maintaining that they were doing and are doing the right and good thing.

 

Morgan Carpenter: Yeah, I mean I think there are a lot of different issues that fall out of this discussion, and I think it's worth talking about some of them. I mean for me though. I think one of the key challenges that I feel is about this concept of normality, which I think makes the experiences of people with intersex variations, and I mean, I wouldn't have made it look at the comparison with obesity per se, although I think it's entirely valid one the people that are working on the intersection between intersex variations and obesity, because there are linkages that come from, you know, metabolic or endocrinological issues that might arise because of the kinds of medical treatment. 

But I think the connection is much stronger … I think the connection is much stronger with disability, and this concept of abnormality and normality is, is fundamental to the concept of disability. And you know that the medical model of disability is very much that the medical model of disorders of sex development, while, while the social model of disability is very much like the, the work that intersex advocates like myself put into community development and put into trying to reform medical practices and I think here, I don't know if you're aware of the work of Ron Amundson, but I find his word really powerful as a description of the failings that come from the constructions of abnormality and normality. And I know, and he would consider the concept of normal function to be somewhat similar to the concept of race, and it's in, you know, a concept of biological is invoked to explain differences, and that ultimately lie in social judgment, rather than biology, per se. So, so yeah, I think that the, the disability movement has a lot to say, and the work of Ron Amundson has a lot to say about the experiences of intersex people. I should, actually I have got a quote just now in front of me that, where, where Ron Amundson argues that “the disadvantages experienced people who are assessed as abnormal derive not from biology, but from implicit social judgments about the acceptability of certain kinds of biological variation”. And I think that that speaks very clearly about the kinds of issues that face intersex people.

And yeah, I mean the other issue that comes up in, in the discussion about, about, you know, where you know, surgeon in paediatric medicine talk about fixing the bodies of children with intersex variations, that there's an implicit assumption that what is abnormal in those children can be fixed. And there's an assumption about what it means to fix their body and, and I think that the assumption about what it means to fix their body is often tied to what Courtney talked about in terms of sexuality and gender, because I think that doctors are, have this ideal of an infant who will grow up to be heterosexual and cis gender. What, what I mean by that is, they will grow up to either be capable of penetrating somebody else or being penetrated. And, and to fulfill a kind of a reproductive roll. And also they will identify with the sex assigned at birth, so will be cis gender. And so there's this construction of what it means to be fixed. But of course surgery does not really fix people it can cause it's own long term health issues, including a need for ongoing hormone replacement. It can, it can, and that itself, if people don't understand, or if they resent treatment that they will be exposed to issues like osteopenia or osteoporosis. If, and surgery can also lead to other issues, including a loss of sexual function or sensation. So it's always some ethicists have talked about, well, I think it's actually Anne Fausto-Sterling, has talked about how the capacity to function in a heterosexual way is prioritised over people's ability to gain pleasure from sex. So these are all real issues that fall out of this concept that somebody, an infant or child with intersex variation can be fixed. And really, I think, what is being fixed often is something to do not so much with the infant, but with the parents or family, where the parents or family are seen as expecting a normal child and doctors will attempt to, well claim to resolve the problem, and give them the child they wanted

 

Christopher Mayes: Yeah, I mean it's, that's really interesting. And yeah, interesting to see, I in reading some of your work and in this space, Ron Amundson’s work was running through my mind, particularly yeah, on that emphasis on function, and the trope that also seems to come up in addition to the, being able to penetrate or be penetrated, the idea that boys need to be able to wee standing up, is this thing that's constantly referred to as a justification for surgeries, which obviously play into a whole range of social cultural stereotypes and expectations around boyhood and masculinity. It's also interesting what you were saying, and also what one of the surgeons in that, that presentation or debate was saying, I was quite surprised, I forgotten the name of who it was, it was the male surgeon, but how he emphasised, basically to appease the family and the parents like just so, giving the primacy of his ethical concerns in these spaces to the family and to the parents, surprised me.

 

Morgan Carpenter: Well, yeah, yeah. Sadly, it was no surprise to me, because that's the kind of that appears to be standard discourse in this field. It is a field where a fairly small number of senior clinicians, I think have been able to construct a particular kind of debate. And just last year a, there was a study reported on audio recordings of parents and clinician interactions in the US in clinics, that treat children with intersex variations, and the researchers found that clinicians were able to use their professional authority to strategically deploy uncertainties, to steer decision making processes. And they describe what, what should be patient centred care, as instead parent centred care. And I think that's also evident in, in the words of John Hutson, who's the chair of paediatric surgery at The University of Melbourne. So you're hearing this from the very senior levels in Victoria, about how children should be treated surgically. And it's not just, you know, gender norms for boys, and you're entirely right to identify the assertion that boys need to be able to stand up to urinate to, to be sufficiently masculine to live as a boy. I mean, people who have been the most outraged that I've talked to about that have been a group of people who use wheelchairs for mobility, and there has been some criticism from the organisation, and yeah, I think that they could identify a lot of commonalities between the normalisation of intersex people, and the normalisation of experiences that they've had medicine but, but it's also about um you know ideas of gender norms for girls and women as well as gender norms for, for boys and men, so that –

There's a particular case in the family court, that's only four years old, now. And the case is called Re: Carla (Medical procedure). It was a case taken in Queensland to sterilise a child who had already undergone some other surgeries. The judge in the case described those previous surgeries as surgeries that enhanced the appearance of a female genitalia. And the sterilisation was approved on the basis of a range of gender stereotypes, including the statement that the child, happily wore a floral skirt and shirt, with glittery sandals and Minnie Mouse underwear, and had her long blonde hair tied in braids, and that she had a range of stereotypical female interests, toys, and colours. And, it's within a child that hadn’t yet gone to school, so the child has no agency in determining what she wears, what her interests are. So yeah, so. So these gender stereotypes impact, impact people in quite fundamental ways from very early on.

 

Courtney Hempton: I'm just, I feel like we've been speaking a bit around medicalisation and medical and surgical interventions, but I'm just wondering if you might, I guess, give a perhaps very brief, brief history in terms of what are some of the, I guess a history of that medicalisation perhaps in Australia and some of the, what is generally the current approach to medical intervention or, non-intervention, I guess perhaps drawing on some of your human rights work and advocacy in terms of, you know where, where you would like to see medical approaches to, or consideration of, of intersex within the medical space kind of shifting towards?

 

Morgan Carpenter: Yeah, thanks, Courtney. Yeah, I think, I think that there are, well there is a limited amount of information in the public domain that's been published about practices in Australia, and to some extent we rely on developments elsewhere in the world, but not entirely. I think, it's very much the case that practices that have their origin in the US and perhaps also the UK in the 1950s, are ones that have been, been internationalised as the model for practices elsewhere. And that's, to the extent that, that I think early surgical and hormonal interventions have become the norm everywhere in the world where Western medicine is accessible. So what that means is that in in high income countries in the west and elsewhere, early surgery has become the norm to try and make people's bodies fit ideas about what it means to be a boy or a girl. And in parts of the world where Western medicine is not acceptable, you see a range of things happening, ranging from infanticide through to public calls on radio and media asking for funds for parents to enable their children to undergo surgery. So it was a current case like that in in Ghana, and I've seen other reports like that in Uganda. 

And so some of these practices originated in the 1950s, and as a result of something called the optimal gender model that was promoted by a sexologist from New Zealand called John Money, who promoted the idea that early surgery to make children's bodies appear more typically female or male was necessary for them to develop in a way that would be psychologically normal for their gender, so he promoted the idea that children needed to look like a typical boy or girl, and needed to have a thorough going conviction of gender, and their parents needed have this thorough going conviction of gender, to ensure that their children would grow up to be normal, and of course what he meant by what they meant by normal, was heterosexual cis gender, and able to perform a normal reproductive function. So that's the model that has really been promoted both in Australia and elsewhere. 

And there are particular points where we can see elements of this. So in the Medical Journal of Australia, in I think 1966, we can see a case of what the, the authors of this journal article in the Medical Journal of Australia described as hermaphrodites, that is a true hermaphrodite. This is the case of a man who was raised male, and the clinicians describe how an adult to come to their attention, and had sought out medical intervention after doctors described his body is abnormal, and they described how patients that came to their attention now much younger would be treated differently. So I think in 1966 in Australia, we can see the beginning of early intervention that is pre-emptive that makes assumptions about individuals future interests and desires, rather than responding to individuals who seek out medical intervention. And but, that became, I think early intervention became the norm. 

And by, by the 1980s we can see a different construction, which, in some ways, comes from a legal construction of who intersex people are so, so we see actually a case in 1979 in the Family Court of Australia where the man who in 1966 was described as being a true hermaphrodite, you know, raised male, always understood himself as male, was described by the Family Court of Australia as being neither male nor female, and he had his marriage annulled on the basis that he was neither male nor female. And, even though he lived his entire life as a man, and he was constructed in some legal journals as offering a case of somebody who had undergone sex change surgery, and was a true transsexual as a result of that, even though he lived his entire life as a man and sought surgery as an adult to, to make his body more typically male. 

This kind of construction of somebody with an intersex variation as somehow transgender, or transsexual is also evident in in a newspaper article and the Canberra Times in 1983 that is really quite remarkable in other ways as well. This article describes how a parent of a 15 month old baby was seeking a change to the birth, to the sex of that child on the birth certificate, after this 15 month old baby had undergone what the paper describes as sex change surgery. And the report describes how the infant was born without a functional penis, and doctors are described as having reported that, that it would be better to raise the child as a girl than as a boy, and the rationales are really quite extraordinary. So the report says for example, the mother is quoted as saying, although Kylie will never be able to have babies, it was thought that she could lead a sexual life as a female rather than as a male, and bringing her up as a girl gives her the chance of being able to have sex, as a male sexual experience would have had to be homosexual. It would have been hard for her school being so different and, but yet you know there's also a recognition in this paper that the child will have to undergo further surgery at age 8 or 10, because the child has no vagina. So there's a lot there about how constructions of what it means to have an intersex variation, or a body that is different, are framed as being transgender, as needing a sex change, or having a sex change being recognised, or ideas about, about what it means to be normal or heterosexual as well. I think it's playing a connection between, between being intersex and being LGBT, even where we actually have no idea, what identity that child grew up to have. And so, but so I think we can see the connections, then, you know, we can see the origins or the spread of the medical model in Australia. And we can see the construction of intersex bodies as abnormal or queer in this discourse.

And today, I think that what we're faced with as an intersex community is something slightly different. And that is a, a hollowing out of the stated rationales for medical intervention. If you like a discontinuation of some of that discourse, while the practices remain the same, together with claims of change to clinical practice, that lack evidence. So if you watch that, that video with the two surgeons at the Royal Children’s Hospital in Melbourne, you'll hear to paediatric surgeons from the same hospital say very different things about how they treat their children. So one of them gave an example of a family who and they say chose not to have their children undergo, their child undergo surgery, on the basis of discussion with the clinicians, even though it was on the table, and you will hear the other clinician at the same hospital talk about how he fixes children, and how he is not thinking about the rights of the child, he is thinking about how to give parents the child they wanted. So you will hear that that different discourse at that same hospital in Melbourne, you know. If you go to Queensland, or New South Wales, you will often hear quite a simple discourse about how children undergo surgery and we have quite a bit of evidence from clinical journal articles about current practices. We also have of course anecdotal evidence from parents and individuals who undergo treatment. In places like ACT, we have a combination of that evidence, but also some disclosure of current practices from, from ministers in ACT. Um So currently, I think that, you know, it's still true to say that early surgery is the norm, pretty much everywhere in Australia. There are some assertions that practices have changed, but they lack evidence, and the evidence that we have, of numbers of procedures and, and where information is actually put into, into journal articles, it shows that early surgery is still the norm. 

Now, I should say, as well. I mean, we’re talking about early surgeries, I mean, the particular concern here is not with any surgery at all. There is a distinction, I think the needs to be made between surgeries that happen that are grounded in gender stereotypes about how bodies should look or function. And there are surgeries that are necessary for individuals to be able to urinate, for example. So nobody is arguing that, surgeries that essential for the health of the child need to happen. Everybody is supportive of that. The questions are about surgeries that are justified through an appeal to gender stereotypes or cultural norms.

 

Christopher Mayes: Yeah, that's, that's an interesting, and I suppose an important clarification. We can discuss this maybe in a little bit, but that point struck me in the Darlington statement, I think it's point 19, saying we recognise that intersex people have health and medical needs, sometimes related to having intersex variation, and sometimes not. We recognise that for people with an intersex variation misconceptions and associated stigma can act as barriers to treatment, current practices are often based on the needs of other populations. I thought that was quite an important and clearly nuanced point, and obviously intersex variation is a distinct community and, and people, but it does also relate to other areas of medicine, where a community might be critical of medical interventions. And then there's almost this childlike response from some people in the medical community of, well, you don't want any medical, you want to deny this as, having any medical, so you just have no medical treatment or, yeah so, yeah, I think that, and then it plays into this, compounding of other factors that then can be used to justify the initial desire for intervention on the part of medicine.

 

Morgan Carpenter: Yeah, I think you raise a really important point there, and it's one that has come up again and again. It doesn't just occur within medicine, it's also one that occurs in the media. So a couple of years ago, I participated in a program called Insight, with a number of other people with intersex variations, and also with a few clinicians, and the questioning by the host of the program was very much focused on, so you want to ban, yeah, so this notion that you want to stop everything. Um, but yeah, but it is more nuanced than that and, and it, the question isn't only about, you know, do you want a ban, should there be prohibition, and then we stop everything. It's also a question about, about medical necessity, about what makes something necessary. 

So I read a clinical journal article by New South Wales clinicians just this year, that talks about how, on the one hand, there is no consensus in relation to the need for surgery or optimal timing, but yet, surgery is still the norm. And, and, on the other hand, patient advocates call for deferral of non-therapeutic surgery, despite the lack of a universal interpretation of medically necessary surgery. So so clinicians, so, so, so clinicians on the one hand, say that, you know, there's no consensus about timing or indications for surgery, yet it's okay to have surgery. But on the other hand, until we can come up with a clear universal interpretation of what is medically necessary, then you can't stop that. So does that make sense, that you know these concepts can both be vague about, about the need for surgery or what is medically necessary or unnecessary, and until we can clearly define what is medically necessary, then everything is on the table. And I find that really disturbing and really quite troubling. Because that makes, I mean, if that makes any sense. But then the burden of proof is essentially been transferred from clinicians who are justifying surgery, to people who want to make a distinction between what's necessary or not necessary.

 

Courtney Hempton: Um, yes. I think that contested space is really interesting and, and as you said, who holds the burden of deciding what is, what is medically necessary, if you're reliant on perhaps surgeons, or people with medical expertise to provide some of that medical knowledge, while also trying to navigate, well what is actually serving more of a social or cultural function.

 

Morgan Carpenter: Yeah, there was a lot of prior art here, Courtney, as well. I mean that there is, in 2013 the Community Affairs Committee of the Senate, which is the committee that's charged with looking at health care and medicine, they published a report on the involuntary or coerced or sterilisation of intersex people. And in that they talk about how clinicians, how there is often not much evidence in favour of surgery that is justified through an appeal to gender stereotypes. Yeah. But they talk about how surgery that has different rationales can be, can be interpolated with each other so, so that surgery can be justified through an appeal to a risk of gonadal cancer, and that while surgery is taking place, they may also do other things that are actually based upon gender stereotypes. Does that make sense? So there's a particular, they talk about a confusion between treatment options to manage cancer risk and treatment options to manage intersex itself, but undermined confidence in the neutrality of those advocating for clinical interventions.

 

Christopher Mayes: So with your work with Intersex Human Rights Australia. What are some of the activities and, and roles of that, in this space. So, I mean, one, one thing, for instance, that in looking in here looking at your work, and that organisation, as well as things you've talked about but, having a small multidisciplinary approach seems to be one area, so it's not just the clinician and the family discussing these issues, its, peer support seems to be a big part as well.

 

Morgan Carpenter:Yeah, This, this kind of comes back to the Darlington Statement and in some ways as well. So just, the Darlington Statement is a, a statement of needs and aspirations, that was drafted at a community event in 2017 by individuals and advocates and representatives of organisations from around Australia and New Zealand, and we tried to essentially identify and hammer out a common position on range of health and well-being and human rights issues in our region. And so it acts that, as a call for reform and a number of areas, including a call for the prohibition of unnecessary medical interventions that take place before somebody can consent, can personally consent. It also calls for changes to medical management of infants and children with intersex variations. So some of the key things here are about, essentially trying to ensure that there is transparency and accountability. So, so ways of trying to achieve those in include, a call for effective independent oversight on clinical practices, a call for resourcing for peer support, because shockingly there is no public funding for peer support in this area. There's a call for human rights based standards of care. And there's a call for the inclusion of peer support, independent peer support organisations within the teams that have been established in most jurisdictions in Australia to, to bring together clinicians from different disciplines. And that's because there is a very strong feeling that what is often missing, what is typically missing, is a connection between parents and families, and other parents and families and children with similar traits or experiences. And this kind of raises another issue which we haven't talked about, and that's what we mean by consent. Consent is important, but maybe we can come to the other some other point. 

I think I'm, Chris your comment was, was about the work of Intersex Human Rights Australia. So one of our roles, I think, is to engage in community development and help, and help to bring people together, and talk with each other and identify what we share in common, and try to build a common understanding about what we need to have happen. But we also do things like we, we which we try to build evidence and build capacity and engage in education and awareness raising as well. So that means that we do research, we try to identify evidence for what is happening, that cannot be dismissed as merely anecdotal, and we engage with policymakers as well. And some of that work, we are obliged to do because of misconceptions, and some of that work we do to try and address the kind of calls that we have, that you can read in the Darlington Statement.

 

Christopher Mayes: Yeah, I thought the Darlington Statement, we will put all of this stuff up on the show notes, but for me it was just a really clarifying series of statements that,  the group that you were describing the collective, I mean, I'm sure there must have been some debate over a lot of different points, but yeah, I think it's a really fantastic clear document that everyone should read. But what sort of responses have you had, say within say the medical community, more broadly, like are there nurses or other allied health people who, you know, we used that language, inside, outside before, but are there people in this, in the medical community who are also working and supportive and allies in this work that you're doing?

 

Morgan Carpenter: Yeah, that's a really important question. I think the answer, sadly, is that there are very few people who are willing to be public, who are willing to articulate a different position to the position that we can read from clinicians who are directly involved in the kinds of surgical and hormonal interventions for social and cultural reasons that we can see and, and I think that there are, as I kind of mentioned a few reasons for that, so I think there is a lot of precarity in in the medical system in Australia. There are very few hospitals that actors centres of expertise or eminence in this field. And if people find that their contracts are not renewed, then there are very small number of other places where they can go and work. So these act, I think to, to limit public dissent by clinicians. And I think also professional standards back to limit public dissent as well. But if, but if any clinicians are listening to this and they want to engage with us, then we would be really happy to hear from them and talk confidentially about their experience, and try and identify ways in which we can work together constructively. You know, as a, as a movement, the intersex movement is always, always keen to hear from clinicians, because, you know, many of us have lifelong health needs that need to be addressed, and so that is another reason why I think having contact with clinicans is always a good thing, we need we need places where people can go and get safe, accessible healthcare. Um, I don't know if the issues are talked about are relevant in other fields that you're looking at. But I think precarity and the hierarchical nature medicine do really inhibit reform, and I don't know how we can address, I think those are systemic issues that are not purely about how intersex children are treated.

Um, yeah. We didn't talk much about this third sex stuff.

 

Christopher Mayes: No, no.

 

Morgan Carpenter: Just know, some intersex people identify as non binary, that's completely okay but, but to extrapolate from that that we all are. It is really just a way of trying to promote the validity of this idea that bodies and identities should be aligned somehow, that if your body is a particular way, then you should have a particular identity as a result and, to my mind, it's extraordinary that we see people in the trans community support that idea, given that their bodies and their identities don't fit in that way. And that's a completely okay way to be.

 

Christopher Mayes: Hmmm. Is that where, because that's I think, in the Allies section in the Darlington Statement where it talks about the distinct, intersex is distinct from other issues, is that, does that touch on this issue that you're talking about?

 

Morgan Carpenter: Yeah, it is also is also a paragraph on sex and gender recognition, that talks about how, undue emphasis, and how to classify intersex people, rather than how we treated is a form of structural violence. And I think, you know, if people read that article on Caster Semenya, I mean with this notion that intersex is a third sex, they could be very confronted by it, because my conclusion is that we should respect people’s sex assigned at birth, unless they determine otherwise. Yeah. Which is quite a contradiction, to that.

 

Christopher Mayes: And just so, on that paragraph. It's saying that the larger goal is not to seek new classifications, but to end legal classification systems, I've found that quite interesting, and the hierarchies that lay behind that legal classification system.

 

Morgan Carpenter: Yes, I know, I'm aware of some pushback on that, particularly from some conservative quarters, but what's striking is that some of those same people have promulgated this idea that intersex is a third sex. So this is essentially a kind of, I mean you could argue it's a compromised push back against this idea that because somebody has a particular intersex variation, or sex variation, that therefore we should have a particular identity or classification. So it's this, its pushed back against this reductive idea of who we are supposed to be, because of a particular biological characteristic. Um, yeah.

I mean this paragraph is also trying to be respectful of the diversity of the population. Which includes some people whose identities, do not fit with the sex assigned at birth and some who do.

 

Christopher Mayes: And that's where I guess the, the also, the emphasis on consent and a self-determination becomes important.

 

Morgan Carpenter: Oh yeah, but I think that really, those two concepts are everything, in the work of intersex organisations. And isn't it so challenging that, those are the issues that fundamentally are just not addressed in medicine.

 

Courtney Hempton: Um, I guess perhaps beyond clinicians, are there other things that, those of us who are interested in supporting the intersex community who aren't in a clinical space, can be doing to be supportive or better advocates, better allies, and perhaps also if there are resources that you can point, point people to in terms of, I know, certainly in my own reading and research preparing for this discussion today, you know, a lot of it's very new to me, and I'm very curious to learn more, so if there are better spaces to, to find sources of information that's probably useful, certainly to myself and I presume to, to other people listening also.

 

Morgan Carpenter: Yeah, thank you. I mean that there are good places to go, there is actually an increasing amount of good information out in the public domain, I think people can, can access and share. I would encourage people, whether you are a clinician or whether you're not a clinician or whatever, if you work in different areas of medicine, law or other areas, you know, please, please, consider reading and sharing material from intersex organisations. Often if you've come at this issue from other fields, whether it's medicine or whether it's, you know the LGBT movement, I think you'll often find a very significantly different set of issues and discourse, that that is talked about within intersex spaces, and you know I can't think of, I mean maybe because it's all so familiar to me, but, but I think for me, I'm continually confronted by the radically different ways in which people will intersex variation talk amongst ourselves and between ourselves, compared to how the rest of the world talks about us. And you know, I kind of mentioned a couple times in, the medical language and discourse in one area, but also, you know, queer and trans discourse of intersex people off often carry so many assumptions about who we're supposed to be, that don't really fit the reality, either. So please try, try and you know you can access some of that work by looking at the websites of Intersex Human Rights Australia or Intersex Peer Support Australia, and there's an increasing body of work published by scholars with intersex variations that you can read, you know, whether they are bioethicists or whether they are sociologists or lawyers, there's an increasing body of work our there that you can read. So look for material published by people with intersex variations, I strongly encourage that. 

 

Christopher Mayes: Yeah. Thank you so much for that, Morgan. And yeah just thinking, you know, it's become in other areas, say indigenous politics, or refugee politics, we want, you know nothing about us without us. I know that's a, I think a phrase that comes up in the Darlington Statement as well but, we want to hear and read from people who have that lived experience, who are in those communities, and yeah your work in this area has been certainly informative for me. And unfortunately we're running out of time, and so we won't be able to talk about your recent paper on Caster Semenya, and your response in the Journal of Medical Ethics, but I will provide a link to that, and all of those resources, and I suppose, just on that, I think, your point in that article, and I think it comes up in the Darlington Statement, about the need to celebrate, you know, not just, not just include, although that would be nice, too, but the celebration of people with intersex variation, yeah. So yeah, thank you so much, and we will provide links and further information in the show notes.

 

Morgan Carpenter: Thank you, Chris. I mean, if I could just make a very quick remark, I think celebration is so important. And I think it's something that is often omitted in discussion about people whose bodies are different. And I think that that the people involved in bioethics, could do with being aware of this as well, and benefit from being aware of this. I think, I find it tremendously sad that bioethics is often wedded to this idea of normality, and medicine is wedded to this idea of normality. When I think we should be celebrating difference more often and we, bioethics and medicine, should in some ways be about, about trying to promote health and wellbeing in people with, with with many different ways or modes of being, so we should be trying to kind of increase the opportunities for different ways of being human, rather than trying to constrain or narrow them. So I think that's one of the guiding ideas behind my work. I think it's about trying to acknowledge, celebrate, and promote the validity of people whose bodies don’t fit the norm.

 

Christopher Mayes: Yeah, thanks. Thanks, again, that's a good way to finish, I think, yeah, challenge for bioethicists certainly, as well as the medical community and general community.

 

Morgan Carpenter: So thank you, thank you so much for chance to come and talk with you. I hope it's giving you some food for thought, and given you what you were hoping for.

 

Christopher Mayes: Yes.

 

Courtney Hempton: Definitely. Thank you so much, Morgan, that was really enlightening. I appreciate your time.

Thank you for listening to another episode of Undisciplinary. You can continue listening in your usual pod places, where it is helpful if you subscribe, rate, review the podcast. You can converse with us on Twitter at Undisciplinary underscore [Undisciplinary_], and our website is undisciplinary dot org [undisciplinary.org], and as mentioned we’ll put links to some of the things we’ve discussed, including links to Morgan’s work, the Darlington Statement, a link to the video of the conversation that was had at the Royal Children’s Hospital that we discussed also. So there’s lots of links, as well as a transcript of today’s episode. So thanks for listening.

 

Christopher Mayes: Excellent. Thank you, bye bye.

 

…

 

[Dogs barking]

 

Morgan Carpenter: Sorry, is the background barking, is it intrusive?

 

Christopher Mayes: No, no, that's fine.

 

Morgan Carpenter: Um, it’s a little intrusive for me.

 

[Dog barks]