FAB Gab Episode 15: Eva De Clercq on Young Adults with Variations of Sex Characteristics

12:33AM Dec 17, 2021

Speakers:

Kathryn MacKay

Eva De Clercq

Keywords:

intersex

variations

people

paper

important

medical

participant

curiosity

question

healthcare professionals

parents

young adults

young

violence

research

term

support

bit

dsd

children

Hello, and welcome to FAB Gab. This is the podcast for the International Journal of Feminist Approaches to Bioethics brought to you by FAB Network. My name is Kathryn MacKay and today I'm joined by Eva Le Clercq from the University of Basel to discuss her paper, 'A Tsunami of Love: Overcoming the Violence of Curiosity, the Lived Experiences of Young Adults Born with Variations of Sex Characteristics'. And that's out now in the current issue of IJFAB. So hi, Eva.

Hi, Kathryn, thank you so much for having me.

Thank you for joining us.

I was really happy with his invitation to be able to talk about my paper.

Oh, wonderful. Well, I'm really looking forward to talking to you about it. I guess the first question to ask you is just a little bit about the terminology that you decided to use in the paper.

Okay, thank you so much Kate. Yes, I think that's a very important question. So my paper talks about adolescents and young adults, with variations of sex characteristics. So throughout the paper I use this terminology, but sometimes also, intersex and DSD. So first, maybe a little bit more about, yeah, what is variations of sex characteristics are. So it refers to a spectrum of physical.. so this can be both chromosomal, anatomical, and Kernodle variations that do not really match the male-female binary model. And these sex characteristics they can be diagnosed at birth, in childhood, and also during adolescence, for example, in the case of the absence of menstruation, but also even later in adulthood. For example, in the case of fertility concerns, now, with exceptions of some very few variations, intersex children or children with these variations, are healthy and do not require any urgent medical intervention. Now, in 2006, there was a very important medical conference or kind of meeting which took place in Chicago, in which they decided also on the diagnostic term to indicate these kinds of relations. And this diagnostic term was disorders of sex development, or so called DSD. And this the this acronym of DSD was largely and is still largely adopted by the medical profession, and replace older terms like hermaphrodite sex reversal and intersex, which, by helical reversals were in fact considered to be stigmatising and confusing. However, this new medical terminology is certainly not beyond dispute, because it has been heavily criticised by patient advocates and effective persons and also support groups and scholars in the humanities, who are very concerned especially on this first part of this acronym, it is disorder, because it is to turn these variations into pathological conditions that really necessitate medical intervention. And this concern with this risk of over medicalization is certainly not surprising, because for most of the 20th century, in fact, I'm children who were born with these variations, and they were subjected to irreversible hormonal and sexual surgical treatments, which were kind of performed to an end here I put it between kind of hyphens normalise them. And this had often dramatic consequences like a lot of sexual sensation or incontinence. And so also for decades, these children were exposed to repeated medical examinations, medical photography, and so all this exposure to these medical Gates has led to a huge psychological distress. Now maybe one last comment regarding the terminology. So although many activists and effective persons are very critical about the label, DSD and might reclaim, for example, this term intersex as an identity to be proud of, not all people concerned identify as intersex. So some might prefer other terms like variation or difference, or the name for a specific radiation. And so this shows us that what I call it experts by experience might have very differing opinions on the term to use to make sense of their embodiment. And so this also requires a kind of linguistic flexibility, which to a certain extent, certainly seems incongruent with a medical desire for a kind of clear transparent umbrella term. So throughout the paper, I use mostly abbreviations of six characteristics because it's the maybe more neutral term, but I also I use the term intersex.

Thanks for taking us through that, that was very clear. And very helpful, I think for anyone who follows up and reads the paper to kind of have in mind this, this history in this.. the contested nature of obviously terms that try to lump everybody together under a single identifying name. So, having given us that little kind of preview of the language, I wonder if you could tell our listeners what the paper is about.. the.. just the elevator pitch of it.

Okay, thank you so much, Kate. So yes, the study is a qualitative study. So this means that I conducted interviews to give voice, in fact, to young people who were born with these variations. And the aim was, in fact to learn more about their personal experiences of living with such variations in order to maybe identify aspects of care and social support that might need further improvements. So I didn't want to focus only on the let's maybe say the most provocative, let's say, or most heavily-debated issue, which is the issue of surgery. But I wanted to look more also, you know, daily lives, how do they, yeah, live and have experienced these experiences. So the data for this paper, so as I said, comes from a qualitative study, which was including not only young people, but also parents and healthcare professionals in Switzerland, who take care for youth with these variations. And so it aims to integrate data from different stakeholders in order to see what they consider to be important in order to provide the best possible care to these young people. So in this manuscript, I only focus on on the young people themselves. Now maybe briefly, coming back to this important meeting that I briefly mentioned before, in which took place in Chicago in 2006. This meeting came about in response to social activists and family demands for change. So there were various narratives of intersex persons that were recounting trauma and pain resulting from secrecy repeated and repeated medical examinations and genital surgeries that really started to question this standard practices of care, which took place before the beginning of the 21st century. And so this is why in 2005, this 50, international experts gathered in Chicago not only to talk about the terminology that I addressed before, but in particular, to address the treatment treatment guidelines for children who are born with these variations. So, in fact, apart from the introducing a new term, the major recommendations of the consensus included the postponement of this cosmetic and procedures until children were able to be included and give their also consent for these operations. And open an ongoing communication with families. And also, I think, very important, is long term multidisciplinary care, which also involves psychosocial support for both patients and parents, however, despite let's say, this ideal of good medical practice, or we're talking about so this meeting took place in 2005. It was published in 2006. The question remains to what extent this new medical narrative has been put into practice. And so this is also a little bit the reason why I wanted to ask the opinion of all the stakeholders involved. So existing empirical evidence shows that in most countries, the medical community has been rather hesitant to institute a full postponement of elective surgeries. And so, this is because parents still have the possibility to decide for these operations, and also the implementation of functional multidisciplinary teams remains very challenging. And despite increasing calls for adequate counselling, there is still much room for improvement both in terms of the quantity so the availability of psychosocial support, but also the quality of this kind of support and this both for families but also of course, certainly for young people themselves.

Yeah, and I find it interesting. So I, I liked that you I named the paper as tsunami of love when the paper really exposes the inappropriateness of the care that's being given, and, and routinely kind of given plus the what you call the violence of curiosity. And I kind of wondered if you might say something about where the tsunami of love comes from, and where the violence of curiosity comes from and how you see these interplaying.

Yes. Thank you so much Kate. I think that's a very important question. So yeah, so maybe I start with, with, let's say that the violence of curiosity, but maybe I first have to take a step back and explain a little bit playing winter to focus, especially on young people. So I have been in all my research to kind of preference for young people. So I've done also a lot of research on palliative care with adolescents and young adults. So it's always around 1529, something's, it's even to 39. And I think this is a group which is often the kind of forgotten within the healthcare system. Because if they fall kind of in between the paediatric healthcare setting, and the adult healthcare setting, and then especially maybe in, in smaller countries, and I think in us, or in, in, in, in bigger places, there might be some more, you know, specific adolescent and young adult centres, but in smaller countries, it is very difficult because of course, there are a small group. And so they're all often for the kind of in between, and this is certainly the case with regard to psychosocial care. And so this is why I thought it was very necessarily focused on these young people, especially because, of course, I think adolescence and young adulthood is such a special phase in our lives in which there are so many things happening. And then maybe being born with such variation, some of these challenges might even be more stronger also, because, of course, we're living still in a very certain extent, I think, very binary society. So this is why I wanted to focus especially on adolescents, and young adults, and other important reasons certainly has to do, the reason why I wanted to do this paper was in fact, to talk about this medical curiosity, or even the violence of this curiosity about his creations, which stands a little bit in contrast, with lack of public awareness about this topic. I know and whenever I talk, maybe with friends or even colleagues about my project, when I was doing to do it, people didn't know what it really is. So there was a kind of confusing nation with transgender and so on. So on the one hand, resist, I think this throughout the time, we kind of medical curiosity, with this topic, a lack of public awareness. And also this has been at least limited academic research also in this field. And so the medical process of periodization so something that I in the paper called The violence of Curiosity has taken the form of this normalising surgical interventions, repeated clinical examinations among medical photographs, in which people's bodies are reduced to the kind of source of information and an object of fascination. And this goes hand in hand with the kind of this attention for people's lived experiences. And so this was why I in fact, wanted to focus on people's lives and young people's lived experiences. And also in academia. The topic of intersex is also sometimes it kind of used to maybe also abused as a kind of theoretical, you know, device to kind of showcase the social construction of sex and gender. But there is also sometimes a lack of real interest in people's lives. And so, also those studies that do generally focus on intersex they mostly focus on parents of children or adults, and much less on the voices of young people. And so that's why I wanted to include them. And then of course also about the tsunami of love. So this is a quote and if not, mine is from my one of my participants who used this when she was talking also about her parents. She was operated upon when she was young, and she is certainly not happy about what has happened to her, but she says that she cannot and does not want to blame her parents for this because she says, based upon what they knew at that time, and what was told to them, they really tried to do the best for me. And so they always have treated me with all the love they could give. And I think so something very also important, which is, of course, the value of, of love and support that these young people receive from from their parents, but also from peers. So this young woman also mentioned about the first boyfriend that she had, and the challenges she had about, you know, so yeah, about you know, sexual act, sexuality, and so on. And so they were very much in love, you know, at 16. But she felt like, being a kind of monster. Yeah. And so she said, I, I could not, not tell him. So after one year, finally, she decided to tell him. And he reacted in a very, very kind and sweet, sweet way that for him, it didn't make any difference at all. And so this experiences, of course, are very, very important, this kind of support, of course, unfortunately, it does not always go in this way, because people can react in various ways. But there is also certainly this tsunami of love, which stands in contrast with this violence of curiosity. I'm sorry, I'm answering a bit too long.

No, I think that's very beautiful. I think that's very beautiful way to contrast these things and to think about them, and it's such a lovely story that that participant had in your paper. So I wonder if, I mean, I feel like we've heard a few of the main points of the paper, but at night might still be good for the listener to know what you think the kind of main contribution is that the paper is making?

Yes, thank you so much Kate, so, yes, I think I'm coming back to this violence of curiosity. I think that the study certainly shows the violence of curiosity with which young adults with these radiations are confronted with in their daily lives. And of course, goes from this continuous medical attention to their bodies, to inactive forms of discrimination in the healthcare setting. For example, one participant was also asked to be screened for carrier screening, so that she, you know, to see whether she could pass on this variation. Yeah, or maybe her sister could have also the same variation. It's also also at school, unfortunately. And so they're also episodes of bullying, but also in society at large. So one participant also talks about border security check at airports. And so this is violence of this curiosity. Certainly undermanned undermines this young person's assurance of inclusion in society, and life, in some cases, even inside and even condone acts of violence and discrimination against them. And as a result, body embarrassment and feelings of discomfort and disconnection were very common among the participants. So some, they describe their bodies as defective, due to the absence of certain property changes. And so for young, one participant also she knew she was, she could not have children. And for her, this was something very, very traumatic because she always thought of herself as a kind of becoming a mother. So others experience alienation from a body that did not confirm their gender identity. And many young adults, specifically surgery and the hormone treatments they had received as approval of their non normality, which was in need of getting fixed. And so also everything something you're really important is that I think a lot child participation in decision making, especially with regard to health is increasingly emphasised by ethical guidelines. So like, for example, the United Nations convention on the rights of children of 1989. And there are also many key legislations also in Switzerland and other countries that emphasise this. The participants in the study did not receive any timely or age adequate information about the variation and were not involved in decisions regarding their medical treatment. And so as a result, they were also kind of unable to understand what was happening to them while growing up. And so They also approached worlds, which I think for young people is very important. The world of dating, intimacy and sexuality, really with is very enormous fear of being rejected. And I think this is such a, such a sad, sad thing. What was first many participants kind of, ah to a certain sense, almost liberating was really finally, when growing up knowing it's at least a name of their variation, which somehow allowed them to understand their bodies, and maybe also an occasion to tell to, to others. And to a certain extent, sometimes it also helped him, when I say, to overcome the power of imagination, so some will describe, that they feared that they were kind of being a monster or freak or an angel, because they thought they were so different from from other states. So just knowing about the radiation being explained, what it's really about was already very important. And then, of course, there's other very important theme of the paper was this tsunami of love. So with regard to the positive impact of parents, support from friends, and peers, so that's something all young people want, let's say, or most most young people emphasise that it would have been very important for them for the support of their parents and friends, but also to have contacts with other young people, and also for their parents, it would have been very important to have contact with other parents. However, healthcare professionals are often very reluctant to do this kind of peer matching. Because they're always afraid of, you know, the misinformation that maybe can go along with it. But this is something very important. And this is something I think social media has certainly helped young, these young people with, because they're now already along.. a lot of these kind of support groups online. And for many of these young people, this has been also a revelation to note that they are not just the only ones out there. But that there are many young people with these variations. And so this is certainly I think, very important, this tsunami of love coming from this kind of support.

Yeah, that's lovely. I wonder, it seems like maybe not so much for writing the paper, but maybe for doing the data collection of the study that this is a part of Did you have any specific challenges with the research? Which is a question that I like to ask for kind of aspiring junior academics? Did you face any particular uphill climbs on this one?

Yeah, Kate. That's a great question, I think. Now, it's the main challenges in fact, were certainly as I think you're really taught, or were participant recruitments. So, for this... so it was a qualitative research study. So I conducted semi structured interviews. So that means that I had an interview guide, which I do not follow, you know, question by question, but it's the kind of a guide that they use to know you know, what kind of aspects to cover. And I did not place any restriction on the type of variation. So there are many kinds of intersex variations. So I did not place any, let's say criteria on whether the young people were operated upon or not. So all of them were invited to participate, who identified themselves as intersex and I tried to recruit more to organisation support organisations, but also through medical centres. And I also made some posts on our university research page. But nevertheless, it was very challenging to, to recruit them. So also something really important to mention is that I did not ask any data on their medical history, because that was not the purpose of the story. But in the end, yeah, I was not ever, for example, able to recreate adolescence, so which although you know, from 15, to kind of 29. So all the young people I interviewed were young adults from 20 to 29. And I think, of course, this shows, still how much stigma and discrimination there is surrounding this, this topic. So a lot of young people... yeah, feel ashamed, they're kind of much more hidden than for example, I think young people who identify as transgender and also not always it was easy to to convince healthcare professionals to help me out with recruitment, of course, they're very protective. And I think that's also correct of them, or their patients. So it has certainly been very challenging to recruit young people. However, on the other hand, so I think it's always important to try to recruit vulnerable populations, like also my previous research recording palliative care, because I think, for inability, and difficulty should not be a reason not to do the research, because we really do not research on this, I think, for inable groups. And then another maybe challenge was certainly related to my own position as a researcher. And so research your positionality I think this might be also very interesting maybe, for other young scholars who are listening to us. So we should, of course, my role in doing interviews, of course, I'm not just a neutral observer. I think that's another very important aspect that feminist research has pointed out that there is not something as a neutral, value-free research. So I present my recite in the paper by also introducing my status. And therefore I think it's important to mention that I do not identify as intersex myself, I'm an intersex ally, but and then maybe I think another important aspect is, maybe this insider, outsider binary is, to a certain extent, a bit of false dichotomy, because it somehow does not take into account diversity within groups, there is also a bit diversity among these young people themselves. So there is not such a thing as the intersex experience. And other hand, I think there are also many aspects or commonalities between researchers and research participants, I think we have all multiple identities. It's not just only about.. yeah, being born with these variations, or not. So that's, but it certainly also was a challenge. And I think it's also important to be aware of this of my own research of positionality. And, and so for example, I was also very sometimes concerned about asking certain questions, especially with maybe about a more intimate sphere. And then after when the interview ends, I always pass to my participants. And 'was there something I could have maybe asked you differently, or?' And then I remember one participant told me, 'yeah, maybe you were a little bit shy.' (laughs) So I started... I also want to thank all the young people who participated for being so kind and generous with sharing their experiences with me.

(laughs). So now we're coming to the end of the of the conversation, I guess, I wonder if there's a sort of primary takeaway that you hope that people will glean? It's I mean, it sounds like there are numerous things that people could could take away from your paper, including the things we're just talking about this kind of research, reflectiveness and methodological questions, but if you had to pick one or two, what would you hope?

Yeah. (laughs). That's a good question. So I think there are many takeaway messages for many different stakeholders. So I think certainly, I hope also healthcare professionals will read the paper so that they might focus less on the biomedical approach and also make sure that psychologists are part of this multidisciplinary team that is not just about urologists, or gynocologists but that's really also psychologists are part of, of their multidisciplinary team. That also healthcare professionals are more open to setting up these kind of peer support relationships for parents, but also for young people. And I know this might certainly be be challenging and I know also healthcare professionals themselves might need much more support in this than they actually do. And it can be going from time to also financial resources. So it may be also a call to the institutions themselves. And then I think another important issue is towards society in general, the importance of reducing discrimination, and I think social media, television, radio, cinema books, there are also an increasing number of films. Not so many yet but some, at least on this topic, and I think this can also give insight to you know, the general public to this topic. However, on the other hand, visibility alone is not enough because of course, as we all know, all these social media and films, and so on they can also reinforce the kind of stereotypical view. So what is also important, I think, is education or syndication in schools. And also, I think, among healthcare professionals at the early stages when they are still learning, so not only to be exposed to this medical aspect, but also to look at lived experiences. And that brings me to the last aspect that I mentioned in the paper that instead of having this violence of curiosity, we need a kind of maybe a feminist curiosity of care, which is not focused on kind of seeking knowledge or trying to know what it's about, but kind of more of questioning ourselves. And yeah, going a little little bit from our own preconceptions of body normativity and body normality, which is a very ugly word, and should just listen to young people's lived experience. So I think this certainly would be among my most important messages.

Well, thank you so much for those. Thanks for speaking to me about your paper.

Okay, thank you so much to you Kate. It was wonderful being here.

Yes, it was a great conversation. And thanks to everyone for listening to this episode of FAB Gab. You can find Eva's paper linked in this episode's notes along with the transcript of our discussion. FAB Gab is hosted by me, Kathryn Mackay, and produced by Madeline Goldberger. You can find our other episodes on Spotify, Radio Public, Anchor or wherever you get your podcasts of quality. Thanks again for listening. Bye.