EBB 361 – Supporting Intersex Communities during Birth with Niki Khanna and Catherine Clune-Taylor, Co-Presidents of InterACT

Dr. Rebecca Dekker – 00:00:00:

Hi everyone. On today’s podcast, we’re talking with Niki Khanna and Catherine Clune-Taylor, co-presidents of InterACT, about supporting intersex communities in birth. Welcome to the Evidence Based Birth® Podcast. My name is Rebecca Dekker, and I’m a nurse with my PhD. And the founder of Evidence Based Birth®. Join me each week as we work together to get evidence-based information into the hands of families and professionals around the world. As a reminder, this information is not medical advice. See ebbirth.com/disclaimer for more details. Hi, everyone. Happy Pride Month and welcome to today’s episode of the Evidence Based Birth® Podcast. Today we have two very special guest experts who are going to talk with us about an important topic we’ve never covered before on the EBB podcast, and that is supporting intersex families during birth. Before we get started with today’s episode I’ve got a quick and exciting announcement for you — applications for the 2025 Evidence Based Birth instructor program are officially open. If you’re a birth worker or healthcare professional with at least one year of experience in the maternity care field, this is your chance to be become a trained and licensed EBB instructor. That means you’d be able to teach the official Evidence Based Birth childbirth class to families either in person or online and lead our EBB Pro workshops for doulas, labor and delivery nurses, midwives, and others. Becoming an EBB instructor is a powerful way to use your voice and skills to make a real impact in your community, and you won’t be doing it alone. You’d be joining a global community of birth workers who are passionate about improving birth and bringing evidence-based care into more and more settings. Now here is the important part: the deadline to purchase your application if you intend to apply is Monday, June 23 at 5pm Eastern and a completed application is due by Friday, June 27 at 5pm. Don’t wait to get started if this is something you want to do. It takes time to complete the written responses and gather your references so if you’re thinking about applying we encourage you to begin the process early. To get all the details or to start your application today, just head to ebbirth.com/instructor. And now, I’m going to take you to today’s episode where we’re going to talk with our two important guests. 

Today, I am so excited to welcome the two co-presidents of InterACT. Niki Khanna is a psychotherapist and educator in the San Francisco Bay Area, focused on working within the queer, trans, and intersex communities. Niki is also a certified sexual health educator and has spent more than 20 years working in a variety of sex education and relationship educational settings. Niki identifies as femme, intersex, and a person of color, and she is dedicated to finding ways to use the skills she has developed to contribute to the intersex community. In her work, Niki provides workshops and mental health support to InterConnect, an intersex support group. She also serves as a mental health consultant to InterACT, the largest intersex youth advocacy organization in the U.S. Niki’s current projects include developing practical training modules for mental health providers, working with intersex clients, and their families. We also have with us Catherine Clune-Taylor, pronouns she/her, an assistant professor in the program in gender and sexuality studies at Princeton University. Dr. Clune Taylor is known for her in-depth, critical feminist analyses of the science of sex, gender, and sexual difference, drawing on her training in feminist theory, philosophy of science, bioethics, and the biomedical sciences. Catherine has published articles on the medical management of intersex conditions in children in hypatia and bioethics, and on the limits of conscientious objection in the American Journal of Public Health. Catherine is also the author of the chapter, Is Sex Socially Constructed? In the Routledge Handbook of Feminist Philosophy of Science, as well as articles in both Cell and Scientific American. Her book, Securing Autonomously Gendered Futures: A Feminist Philosophical Defense of Intersex and Trans Kids, is under contract with Duke University Press. Niki and Catherine, we’re so honored to have you. Welcome to the Evidence Based Birth® Podcast.

Catherine Clune-Taylor – 00:02:48:

Thanks so much for having us. I’m thrilled to be here.

Niki Khanna – 00:02:51:

Yes. Thank you. Thank you.

Dr. Rebecca Dekker – 00:02:53:

I’m so excited that both of you agreed to come on here and talk with us because for a long time now here at Evidence Based Birth®, I’ve wanted to publish a podcast episode resource for our listeners, many of whom are birth workers, but also expecting families so that we can all have education on how to better support intersex families in birth, particularly when families give birth to an intersex infant. So I was wondering if you could start off by kind of giving us a primer in defining intersex for our listeners and also talking with us a little bit about how common it is for a baby to be born intersex. And then on the other end of the reproductive spectrum, how common is it for intersex people of childbearing age to become pregnant and give birth? So can one of you start us off?

Niki Khanna – 00:03:38:

I’ll let Catherine start.

Catherine Clune-Taylor – 00:03:39:

Sure. I’m happy to start. And I’ve been recently kind of revising my book. And so I’m very up on the data right now. It’s very readily available to me. So, yeah, this is Catherine. And I am thrilled to talk about this. And. Able to give you kind of this background. Sorry, I’m a little bit rambly, weird seeing myself. So thinking about defining intersex, I think we can very generally define it as any kind of embodiment where the various traits that we think about as sex traits don’t develop in what we kind of think of as the standard alignment. So first, it’s worth thinking about what are the various kind of sex characteristics or traits that one can have. And we can think first about like the makeup of a gonad. So whether someone has an ovary or a testicle. But they could also have neither. They could have a mix of both. We often talk about chromosomes, whether folks have XX or XY chromosomes, but also there’s a large variation in those as well. People can have more than two so-called sex chromosomes. And we can also think then about kind of internal reproductive structures. So whether someone has a uterus or whether they have a vas deferens, for example. So what kind of reproductive structures they have internally, as well as what kind of external genitalia they have. And we can also, in addition to this, think about hormones and whether someone has kind of what we think of as typical hormone levels endogenously. And what we know is that in development and sex differentiation, we can see a lot of variety. So there are people who can have XY chromosomes, but develop with very typical appearing female or feminine genitalia. We can have folks who have XX chromosomes, but also have very masculine appearing genitalia. And so there can be a huge variety with regards to that. Now, generally speaking, we know that one to two out of every thousand live births, is of a child who’s going to receive some sort of normalizing genital intervention in infancy, most likely. And one thing that is very common, along with these kinds of pediatric normalizing surgeries for intersex infants, is that often they will receive gonadectomies that sterilize them as part of that. The arguments for that for a long time were about preventing tumor growth. However, we now know from the data that the risk of tumor development, particularly prior to puberty, is quite low for most folks. And I’ve argued in my own work that this gonadectomy is done primarily in order to be able to control hormone production down the road. Right. To ensure like if we’re assigning someone a female sex birth surgically through genital normalization. We don’t want their gonads to later produce testosterone. And so it’s easier from any clinician’s perspective to be able to manage that way. And so that affects the rate or the frequency with which intersex folks are able to give birth. We do know, for a long time, it was said that intersex folks were sterile. In reality, the majority of intersex folks who are sterile are that way because they were sterilized themselves, usually without their consent in childhood. Also that intersex conditions run in families. And there are a lot of folks with intersex conditions who have given birth. But what is the kind of true number of that? It’s hard to say.

Dr. Rebecca Dekker – 00:07:35:

Imagine you said one in a thousand to two in a thousand, which would be, you know, one in 500 seems like fairly common for something that’s not discussed a lot. Everybody kind of assumes your baby’s either born male or female. Nobody even, you know, when you’re talking about what you have, you know, they don’t think about other varieties. Is some of the intersex conditions then not identified at birth and they’re discovered later on?

Niki Khanna – 00:08:04:

Yeah, this is Niki. I’ll jump in just because, yeah, that number, right, is for something that would be like apparent at birth when you do the like look between the legs and what do you got kind of thing, right? But which isn’t the vast majority of intersex people. And so there’s going to be one, so many more intersex people that don’t fall into that like numerical count, right? Because it’s not something that’s quote unquote detectable at that point, right? And so there’s going to be more sort of people than that, right? There are more of it happening. And I also think part of it is the idea that, one, we’re not called intersex at birth. Like that’s a term that is used by activists and folks that are in community and not a term used by doctors. So it isn’t what parents are told. You’re not told you have a child that’s intersex. They don’t use that word. They’ll say your child might have the following condition, right? And so the term that’s medically used is disorders of sexual development or DSD. And so that is what’s used like across like all sort of physical medicine and mental health medicine. Like that’s a term that’s used. Not necessarily the term that a lot of us use in sort of like the intersex activist and advocacy group. We might use things like differences of sexual development to sort of be able to use a DSD sort of thing so that we can talk with people. But hold in our minds that we’re not disordered, right?

Dr. Rebecca Dekker – 00:09:31:

Right.

Niki Khanna – 00:09:32:

There’s no mandate to report. And so the numbers that we have are based on like doctors deciding to assign some sort of like diagnosis. And I keep putting quotes up knowing that people won’t see it. I also wanted to say like there are many times where it happened with saying things and like air quoting. I don’t want it to be like air quotes.

Catherine Clune-Taylor – 00:09:54:

Yes.

Niki Khanna – 00:09:55:

And so, yeah, that that, you know, there just there just isn’t sort of like lost where I was going with that. But, yeah, we don’t really have a great idea of like the count of things because there’s no mandate to count. There’s no sort of like we have like an idea based on like surveys of doctors like submitting diagnosis codes, da, da, da, da, da, da. But no actual like like, you know, count the way we would want there to be a count. Right?

Dr. Rebecca Dekker – 00:10:29:

Right.

Catherine Clune-Taylor – 00:10:30:

Sorry, if I can jump on that. I just, there were a couple of things I wanted to add to that. That’s great, Niki. You said a few things that I wanted to add as well in that. And I wanted to say there are a lot of folks who might be diagnosed at different stages across the lifespan. So it might be by accident in childhood. It might be when puberty doesn’t go the way folks expect. It might be in adulthood. Folks might go for some other kinds of interventions. And so sometimes folks, for example, they might not have sterility, but they might have reduced fertility. And so certain kinds of investigations will be done then that might reveal a diagnosis. But there’s also a group of people who are going to find out completely by accident, right? So they’re in a car accident and they end up having an exploratory laparotomy. And then it’s like, oh, those are not the organs we expected to find in there, right? And Niki is really quite right that in terms of the data, we know there are at least 40 different distinct intersex conditions. And to call something an intersex condition just means that it might, as a side effect, result in this kind of atypical development of sex characteristics. But it might not, right? So whether or not someone’s kind of condition rises to the level of being clinical, right? Like, that there’s some sort of symptom for one to investigate, they might not know at all. And one thing that I very recently found, there was a study that was done just a few years ago. It was a randomized genetic study that was trying to look at updating the rate of congenital adrenal hyperplasia. In the general Caucasian or the general white population. This data has not been revisited since 1985. And what they found was actually that the rate, they re-estimated the rate of the non-classic or the kind of less dangerous, the more common form of CAH, which is the most common intersex condition that exists, to be at 1 in 200 in the general white population in the United States. And 1 in 200, that would make it actually the most common condition, right? Like the most common genetic condition there is. But it’s likely the case that the majority of people with intersex conditions don’t know.

Dr. Rebecca Dekker – 00:12:56:

Okay. And can you explain what CAH is? And you said congenital adrenal hyperplasia, but to a lot of our listeners, it might just sound, intimidating in their mind.

Catherine Clune-Taylor – 00:13:06:

Of course. Yeah. Congenital adrenal hyperplasia is a condition that’s associated with the kind of hypergrowth or the enlargement of the adrenal glands. And one of the effects of that can be heightened production of androgens or testosterone in utero and throughout the lifespan. It’s heightened rates of testosterone production for both XX and XY fetuses, but we really only care about the XX ones, right? Because we’re concerned about the kind of masculinization of their genitalia. And so children with CAH are the group that surgery is most commonly considered for in infancy or in childhood.

Niki Khanna – 00:13:50:

And I also want to jump in and say, because you sort of focus on birth, one of the places where you might hear about it most often is that some variations of the CAH are linked to salt wasting, which is something that like at birth, many babies are checked for because it can be very like urgent that a child would need some sort of like medical intervention around that aspect of what’s happening. And again, that’s only some like variations of CAH might include the salt wasting. And salt wasting then is an adrenal issue that many babies are sort of like tested for.

Dr. Rebecca Dekker – 00:14:25:

Okay. Salt wasting is when the babies are losing too much salt in their urine and they become like low sodium in their blood. And so that is a screening test that often babies receive.

Niki Khanna – 00:14:40:

Yeah. So some variations of CAH include salt wasting.

Dr. Rebecca Dekker – 00:14:43:

Okay.

Niki Khanna – 00:14:44:

So that might be a place where like some people, right, have a link to it or have an acknowledgement or understanding of it. It’s that link. Yeah.

Dr. Rebecca Dekker – 00:14:54:

I want to go back to the very beginning of our conversation, Catherine, you were talking about the one in a thousand might be related to, that’s the number of babies who are identified and referred for surgical intervention. And that actually gave me chills when I was thinking about myself potentially giving birth to a baby and then being told your baby needs to have genital surgery. And then having that baby sterilized as a result of that surgery just sounds shocking, but from what I understand from following InterACT is that is a traditional medical pathway for these families. Can one of you tell me what is the typical spiel or the speech that a parent gets from their doctor if their baby is identified as having this like differences of sexual development in their genitalia?

Niki Khanna – 00:15:44:

I’ll jump in and say there isn’t a typical speech, unfortunately. There’s not a specific protocol. It really depends on where you’re at, the understanding of the providers that you have, the medical providers that you have, this sort of like, there’s so many thoughts and ideas about what should be done. And it isn’t something that happens necessarily every day, though it happens often enough, clearly. There isn’t like a specific protocol about what is said, right? And so, or what is told to parents or how it is framed for parents, right? Like Catherine mentioned earlier, there was often this framing that we do the surgery to prevent tumors, i.e. cancer, the C word, right? Like, no one wants to, right, have something that would cause cancer, right? Like, but because of the- like, lack of either update of information or understanding of how common or not common that is, depending on what’s going on. And that varies, right? So it isn’t like all intersex variations cause this rate of cancer. There’s such a wide sort of like spectrum of what the chances are from none to like something we should be monitoring seriously, right? And so, like, there isn’t a specific thing that parents are told. And what I will say is that sometimes it doesn’t happen at birth, right? Like, I’ve counseled birthing parents who are pregnant who were told ahead of time, this is what is happening for your child. And these parents have sought me out because they didn’t feel like they were getting accurate information from their providers or they felt like they were being pressured to make a decision, right? Like, before they’re giving birth around what to potentially do. And so, it’s not even just at birth. It could be before, right, with all the scans and the amniocentesis and the different tests that can be done now. You can gain a lot of information that can be very relieving and also can then give you information that providers want to sort of, like, you know, tell you about something that they find, you know, that you need to do something about. Yeah.

Dr. Rebecca Dekker – 00:17:52:

So, some parents are finding out about this through genetic screening results or through anatomy, like, just the typical anatomy ultrasound where you think you’re going to find out if it’s a boy or a girl. And then what they’re told is often just based on the provider’s opinion and kind of what they’re used to saying.

Catherine Clune-Taylor – 00:18:09:

Yeah, it really does often come down to kind of what the provider’s opinion is. And I know, you know, I’ve talked to people through InterACT. I’ve come into contact with parents through this work who part of why they got involved in intersex activism was because they were advised to selectively abort. Right. Like that. They had such a kind of horrible experience in which they were told, well, you know, it looks like based on this scan, your child’s sexual anatomy might be somewhat ambiguous. But like, don’t worry, it’s still early enough that we could just, you know, like selectively abort now. And then the family was like, well, are there any actual health problems? Is anything going on here? And the truth is that in the majority of cases, as long as someone can, you know, excrete and void urine, there really are no health risks associated with having ambiguous genitalia, for example, or some other kind of intersex trait. Now, there might be health conditions like associated with the underlying condition, but merely having the intersex trait in themselves don’t pose health risks. So that is definitely something that happens. And I will say that like historically, it was a field that was really defined by paternalism. So it was often thought that like parents can’t handle this kind of information. And so the kind of spiels people would be given were things about like their child’s development being unfinished, or they had some sort of underlying kind of physical disorder, but it could be easily fixed not to worry, right? And they would just kind of decide. Whether they were going to assign male or female, based on what kind of physical traits are there, but also based on surgical limitations. And that still plays a huge role in sex assignment, is what physicians think they can achieve surgically. And so it was the case often that parents were just kind of told what was going to happen. Now parents tend to be more involved in the process. And increasingly, clinicians will say that like parents really demand surgery. But it’s not clear that parents are given an environment in which considering not doing surgery is a real option. Right. If we say, well, the standard treatment model is generally surgery. That’s what we’ve been doing for decades. That’s what people still recommend. We don’t have a lot of good quality evidence no matter what. But I do think there can be a lot of pressure on parents and on physicians. To ensure that those folks bring home a quote-unquote normal baby. Right. And you even noted, Rebecca, like how discussions are about is it a boy or a girl? Right. And if we can’t answer that question right away, where do we go from there?

Dr. Rebecca Dekker – 00:21:11:

It just leaves me somewhat speechless in thinking of like… being told that this differences in development means you’re not worthy of being born or, you know, that you need to be quote unquote fixed before they can bring you home from the hospital. It’s just really sad.

Niki Khanna – 00:21:31:

Yeah, I mean, I will say personally, in my experience, my mother’s amniocentesis results in 1976, many years ago, were kept from her until past the point of her being legally able to have an abortion because they were so sure that she would abort me. That that would be the decision my parents would make. So it was also like a different era, right? It was like the idea that like having an abortion is the extreme thing you don’t want to do, right? And so it was also this other sort of like way of holding what that means for a person. But I think that like the way that we look at it now doesn’t make it any better, right? And so it’s still this idea that like there is something about this child that’s going to be so horrible to you. Right. That you won’t be able to deal with it. So we can’t tell you for X, Y, Z reason.

Dr. Rebecca Dekker – 00:22:23:

So it’s often just not explained to the parents.

Catherine Clune-Taylor – 00:22:26:

Yeah. And I was going to, even now, many parents, in retrospect, they feel like they weren’t given enough information, that they were rushed into a decision or agreeing to something. When, they really just weren’t fully informed.

Niki Khanna – 00:22:42:

And I think part of it is that there’s like a lack of providers showing parents that there are intersex adults. That this is not something that is fixed and cured, and that there are actually people who are adult who are intersex. Like, they’re not connected with support groups or, like, know that we exist, right? Like, people have, like, looked me up because I was, like, listed some, like, I have one intersex therapist is, like, what I put on it. Like, I identify myself as intersex in a very open way because it helps people find me and, like, look me up. And because people are not told, right, they’re not even told the word intersex, but they can sort of, like, pull that one off the Internet, right? And so, but they’re not told that there are, like, support groups or there are other adults that might have a similar variation to what your child has, and can you talk to them? Can you, like, see what their lives are like? Like, providers really sort of view it as, like, this is something that we fix, and that isn’t there in the future. Or if there is a support group, it’s a group of folks that have all been, quote, unquote, fixed. Right. And so it’s people that sort of all feed into the narrative that this is what you’re supposed to do. This is the best thing to do. And without understanding that, like, you’re making a big, big decision for this, you know, person, small person in front of you who can’t tell you. Right. What they want, regardless of like picking a gender or a sex for a person, this is just like sheerly like, do I want to have surgery on my body that causes things that are permanent, that cannot be undone? Yeah.

Dr. Rebecca Dekker – 00:24:34:

Can you talk a little bit about like, what are these ethical challenges and the quote unquote, you know, treatment of intersex conditions that, that have evolved over time? And like, you know, I’m imagining we started in the last century of a place of just unilaterally doing surgery without even like explaining to parents or giving them a choice to now it’s presented somewhat as a choice or, or is it not? What is it like today?

Catherine Clune-Taylor – 00:25:01:

So I would say that like, you know, when this treatment model first kind of officially was introduced in the 1950s, it was really understood that there was kind of general consensus that this was a good thing, right? That like, it was good for people to be normal that are quote unquote normal, right? To have like a typical appearing genitalia that in fact, like the appearance of the genitals was more important than whether one had sensation in their genitals or whether, you know, they were capable of satisfying sexual encounters that it was really about being able to kind of pass as quote unquote normal. And. As things kind of have moved along, and especially with the emergence of the activist, intersex activist movement, there have a lot of questions that emerged about the ethics of the treatment model. And I think the core question really is about the autonomy of intersex infants, right? But also intersex children or folks who are being kind of coerced into making medical decisions. That normalize their bodies in some way or another, perhaps without being able to give informed consent or fully understanding what the consequences of those decisions are, right? That like folks can be told, well, you know, it’s just better and easier for you to have your gonads removed so that we can avoid this cancer risk. But then they’re not told about like, well, and that means you’re going to need to be on hormone replacement forever. And we’re not really sure how that works and if it works as well, right? Or what are the kind of the effects of that? I know a lot of intersex folks right now who are in the position where they’re in menopause, but no one really knows what menopause should look like for them, in part because for so long, we just sterilized everyone, right? And so, you know, I think there’s a real question here about first and foremost, the autonomy of actual intersex individuals, right? And that raises questions about the limits of parents’ rights to choose. It also raises questions for some clinicians about what are their rights in terms of… Whether they should be able to offer treatments that they see as in line with their kind of moral position or their beliefs around what quote unquote should be normal or should exist. But I think that’s really, I think, the main issue is this one of autonomy.

Dr. Rebecca Dekker – 00:27:36:

Niki, can you tell us more about InterACT and how is the team advocating for intersex children and youth? Like, what brings you all together to really focus on that population?

Niki Khanna – 00:27:49:

I mean, the work that InterACT does is sort of manyfold, right? We’re sort of the only act in town that does pure advocacy work. So InterConnect is another group that is a support group, right, for intersected folks of all ages and their family, friends, relatives, whoever, right? But InterACT is a group that does advocacy work, right? So either trying to change laws, trying to advocate with medical groups, right, trying to change policy. If we can’t change a law, can we change a policy? Can we influence how that’s done, right? And there is a youth leadership sort of component to it. So our sort of best actors in this, right, so the best thing to do is to find older than baby, right, like intersex folks who can sort of speak to people and say, like, hey, this is what happened to us, right? So we do have a group of intersex youth that sort of voluntarily, they’re not, you know, hopefully not forced to do so, but are saying, like, hey, we want to talk to people and be sort of, like, out there. And also we offer support for them, right? So we had, like, a retreat this last summer where we offered, like, you know, mental health support around being intersex, around, like, in their lives in general and also around doing this work, right? It’s hard work, right? I didn’t say this up top, but, and if I hadn’t come through in what I’ve said so far, I am an intersex person. And so it does impact you differently to be doing the work and advocating for this and speaking to doctors and, like, people in power who, like, don’t really see you as either human or they refuse to admit that you even exist. And so there’s this sort of, like, odd sort of thing that happens where they’re like, oh, but, like, we fixed that. And I’m like, here. And so, like, I’m not, like, going away. And so the work that InterACT does is sort of, like multiple ways, right, of sort of trying to change policy around these interventions, right? That’s the basic thing that they do.

Dr. Rebecca Dekker – 00:29:58:

So community organization, advocacy, policy change. And I saw on your Instagram page that you’re really focusing on kind of local action, state action. You know, what are some of the political movements at the national and state level that are interfering with your ability to fight for intersex rights?

Niki Khanna – 00:30:18:

I mean, like many organizations, we have had to make a hard pivot after the election as far as like where we’re going to focus our energy, right? Whereas we had some traction before with the previous administration federally, we will not have that at all going forward. So we are sort of like rerouting our energy to more sort of like regional, local, like groups to make change and outside of legal changes, right? So outside of like legal policy into like hospital policy, right? So there’s so many levels, particularly in the U.S. and the ways that like policy, like hospital policy and medical treatment policy is covered, right? That like in the U.S., there are so many places, right? Because we don’t have like a national health program where you go to one place and say, please, excuse me, change this. There’s, you have to sort of like go like in fits and pieces in different places, different organizations, different medical groups. And so we’re sort of like looking at where those pivots need to be to get the most sort of traction and make the most impact now in this like new administration that’s coming in.

Catherine Clune-Taylor – 00:31:29:

It’s also worth saying that the waves of anti-trans legislation generally often does, whether intentionally or not, and ensnaring intersex folks in one way or another. And this is simply because a lot of that legislation tends to involve giving a very strict, exclusive definition of binary sex at some point. Whether it’s, you know, we want to say that one’s gender is equivalent to the sex they were assigned at birth or something like this, or, you know, based on ovaries or based on gonads or-

Dr. Rebecca Dekker – 00:32:06:

Chromosomes or something.

Catherine Clune-Taylor – 00:32:09:

Whatever, right?

Dr. Rebecca Dekker – 00:32:09:

Yeah.

Catherine Clune-Taylor – 00:32:10:

Which is often really fascinating to me because it will say something about, you know, like… Men are XY, women are XX. And I’m like, end up when I say to most people, like, have you ever checked what your chromosomes are? Like, are you sure? Do you know which one would apply to you? Because generally speaking, most people don’t know. And simply because you’ve had a certain kind of embodiment doesn’t mean that you can rely on your chromosomes coming out the way that you expect, right? But often as well, anti-trans bands, specifically those that will target access to gender-confirming interventions for trans folks, and trans kids in particular, will often include explicit exceptions for intersex kids. So to ensure that we can still do the kind of surgeries that folks want to do with intersex kids, they’ll ensure, and they’ll often also include along with that exceptions for cis children. And often that has to do more actually with minors. So teenagers who are accessing things like breast augmentations, but about like cis minors who want to become more normatively cisgendered, we’re okay with. And we’re okay with the use of these interventions on minors, potentially without their consent.

Dr. Rebecca Dekker – 00:33:29:

Or toddlers or children. Yeah.

Catherine Clune-Taylor – 00:33:32:

But the idea that, you know, that trans teens shouldn’t be able to, but they shouldn’t be able to access like hormone blockers or anything like that. Right. Yeah.

Dr. Rebecca Dekker – 00:33:42:

Talked a lot about like the infancy childhood aspect. Could we talk a little bit about the family building aspect and intersex communities and who are intersex like and building families, celebrating that, honoring that and talking about ways we can support them.

Niki Khanna – 00:33:59:

Yeah, I can jump in and just say that I think it’s important just to acknowledge that some intersex folk could participate in having children, like giving birth, right? And so that that is something that people don’t think about. And it’s often something that medical providers, they make the assumption that we’re just not going to want to. And so that that’s not something we’re interested in or they have their own biases that we just shouldn’t. Really. Like they’ll say, like, I didn’t think you were interested, but what they really are thinking, like, oh, no, someone like you should not have children. And so that’s always been the sort of like underlying messaging that I got, right, is that I should be normatively like feminine, but like, don’t have kids, that would be like, not a thing for you to do. And so it made it really difficult for me to even think for myself, whether I wanted to have kids, because I’m a very defiant person. So I could have just had kids to be defiant. And I had to go through a process of being like, actually, I don’t want kids, but that’s for myself, not because you’re telling me that I shouldn’t. But I think that there are a lot of us intersex folks who can and do want to have children, want to participate in that in some way. And they’re trying really desperately to find ways to preserve fertility for themselves. So and because there is so many more ways and so many ways that could happen in the future, for that to happen. And many of them are like, trying to say like, hey, like, I want to have this done, because this is how I want my body to be like, I want to like, live in this sort of embodied way. Right. And I also want to preserve my fertility in a way that like, is often still offered to some trans people, depending on where you are in the country and how people think about it, but isn’t offered in the same way to to intersex folks. Right? Like, we’re not thought of as being people who want to or slash should have children. And so yeah.

Catherine Clune-Taylor – 00:36:07:

Yeah. And I would say two things there. So one thing I would love is I think there isn’t enough discussion about the possibility of intersex during the prenatal period. Like, I think that should just be part of prenatal. Treatment is that, you know, we talk a little bit about, you know, it’s possible that you might not have the baby you expect. And one way that that might turn out is that you might have an intersex infant, because it is something that we generally don’t talk about. There’s often so much kind of stigma and shame around it. That many folks will keep it quiet or they don’t really know how to talk about it. Even if they do want to talk about it, sometimes you don’t really know where to start. And so… Because of that, I think it’s the case that like for a lot of folks who end up having intersex kids, they didn’t even know that was a possibility. Right. And I think that contributes to the sense of emergency that happens when an intersex infant is born. And then I would say my other thing is I would love it if we started thinking about. The fertility of intersex people, just like the fertility of anyone else, which is that like, it’s not an all or nothing thing. Like I often say there are a lot of cis folks who require some kind of… artificial reproductive technology or some kind of medical assistance in order to build a family. We don’t like think of those people as out and out infertile or people who shouldn’t have children because it was maybe a little bit harder for them to have children than we might expect. That could be true for a lot of intersex folks as well. But we tend to kind of position them as exceptional with regards to these issues of fertility or perhaps needing some kind of assistance when like… That’s the truth for a lot of folks. And perhaps really we should be thinking about. Everyone’s kind of equal opportunities to family build if that’s what they want.

Dr. Rebecca Dekker – 00:38:12:

When you talk with young people through InterACT who are interested in having children of their own someday biologically, what are some tips or advice you give them for finding that kind of fertility support?

Niki Khanna – 00:38:25:

Oh, gosh. I mean, most of them have to sort of make it up themselves. Like many of them will persistently ask. Like, providers, like, so if I do this, how is it going to impact this aspect of my fertility? And like the providers don’t have an answer because they haven’t thought about that because there isn’t great protocol for how like intersex folks are worked with, whether that the protocol for treating infants or the protocol for us as like adolescents through the end of our adulthood, there’s not a lot of protocol as far as any of it goes, like surgeries or HRT or like any of it, there’s not consistent protocol. So if there isn’t consistent protocol, there’s not going to be any sort of like thinking about fertility or like preserving any sort of aspects of fertility for someone. And so it’s just not on folks’ radars, right? And I mean, there’s so many reasons why, right? Like we’re thought of as like people who just shouldn’t have children, right? That’s like the historical, there’s something like sort of flawed about us and therefore we should not reproduce. That’s like been in the sort of atmosphere for a long, long time. So you have to advocate. Those young people do have to be very insistent about it and they have to be very smart about it. And I don’t want everyone to have to do that because everyone can’t do that, right? And so everyone’s not going to be an advocate in that way. And I don’t think every intersex person should be an activist or an advocate in that way. We shouldn’t all have to do that, right? In order to get the things that we need.

Catherine Clune-Taylor – 00:40:06:

Yeah. I would say from most intersex people I know, and I should say I’m speaking as someone without a diagnosed intersex condition, but all the intersex folks that I know have had to, you know, become specialists in their area and in finding clinical help, right? Of having to shop around and interview all kinds of doctors to be able, and often the doctor they do end up working with is someone who doesn’t necessarily know about this area, but is willing to do some work.

Dr. Rebecca Dekker – 00:40:39:

Like, they’re open-minded, and yeah.

Catherine Clune-Taylor – 00:40:41:

And the fact is, one thing that I think Niki’s been pointing to here a few times, but it’s worth saying explicitly because of this assumption that intersex conditions are things that are dealt with in childhood. Like they are somehow the surgery fixes it and just ends it in a way that totally like doesn’t acknowledge that whatever the underlying condition is might have further health issues that are unrelated to kind of sex ambiguity or sex variation, right? So because of that, the majority of people who are trained to treat intersex folks are pediatric specialists. So once someone ages out of pediatric medicine, finding an endocrinologist who’s competent to treat you is so difficult.

Dr. Rebecca Dekker – 00:41:26:

Yeah, Niki just closed her eyes and gave a big sigh.

Niki Khanna – 00:41:29:

Yeah, I mean, I’m in the San Francisco Bay Area. I’m in the place where you should be. I should be able to find providers. And I pay a lot of money for good insurance. And I cannot, right? I am constantly having to like, ask somebody to ask somebody to ask somebody to see if they’ll make room in their practice for me or if they’re considerate. Because I just cannot find folks that feel comfortable, right? They always say that, well, I don’t know enough. I don’t feel comfortable. I don’t feel comfortable, right? And so, and you do have to find that person who is willing to sort of go out on a limb. Right. And sort of like follow you out there. Right. You are the one leading them. You’re the one saying like, well, I looked at this and I looked at that. And so like. You know, I was like, I did not go to medical school, but I feel like, right, like I should get an honorary degree of some sort. Yeah, because I feel like I’ve looked up all this stuff and had to advocate for myself to then bring it to somebody who can actually do something with that information.

Dr. Rebecca Dekker – 00:42:36:

Speaking of like finding resources and support, you mentioned a couple organizations for our listeners who want to learn more about intersex, who want to find supportive resources. Where are some places online we can go or we can follow?

Niki Khanna – 00:42:54:

I mean, I would follow InterACT. Yeah. And so that’s a place where you can get like publicly available, like patient policy guides, hospital policy guides, like things like that. If you’re looking for that sort of like also legal advocacy information. So trying to get your medical records if you’re an adult and you want to know what happened when you were a kid, particularly if folks are like having sort of difficulty becoming pregnant and they don’t know why and they’re sort of like wanting to get their historical medical records. That’s a way to try to like legally ask for them. So there’s a lot of resources that InterACT have just sort of forward facing on their website, interactadvocates.org. And then if you’re looking for community support, like a support group, InterConnect is it, right? So that would be the place that I would send potential parents, like any sort of family, relative, partner, like, you know, anything like that and intersex folks themselves as like sort of like all ages and experience. That would be the place that I would send folks to be able to connect with other people. Right. And so I will do presentations like I do teachings on how to work with intersex clients for mental health providers. And so I do these presentations every time I will hear from somebody afterwards. I’ll get a little email that says, I think I’m intersex, but I don’t know anyone else who is. I’ll connect them to InterConnect and they’ll be like, there are a dozen people in this tiny town I live in, in Montana. And I’m like, yes, like we do exist. We just don’t have a lot of ways to talk about ourselves or a lot of ways to organize and be together. And so the thing that InterConnect can do is connect people, hence the name, right? So they can like offer support and like psychosocial support or that sort of like social support is so important, right? It isn’t the thing that’s followed up with by medical providers. They’re like, we did the thing, we’re all done out in the world, you should be fine. And so many of us need to find other people that are similar to us in some way, even if you don’t have the same like intersex variation, even if there’s something that you’re going to be find relatable with another person.

Catherine Clune-Taylor – 00:45:08:

Yeah, totally. Those were what I was going to say as well. Yeah, they are the best places. And I think especially InterConnect can do the work that I think perhaps your listeners are really interested in. If you’re a potential parent, if you’re an intersex person who is family planning or interested in kind of taking up that work, or, you know, you’re a parent of an intersex kid and you want to connect with other parents, or maybe you’ve just found out that your birth to be is going to be intersex. And you want to connect with families who’ve been in that same position, because I think that’s the real issue, I think, with intersex is the isolation. Right. That like. Often when folks do have an intersex kid, they might not have ever known that that was a possibility. It was not something they expected. And because of the kind of way it’s dealt with, folks act as though it’s something you’re not supposed to talk about. And I will say in the same way that Niki has the experiences that she does, I often go and give different kinds of talks and will speak to academics and sometimes speak to medical students and in various places. And I will tell you at least every other talk I give, someone comes up to me at the end and tells me some story about someone in their family. And it’s like, you know, oh, my aunt, they didn’t know if she was a girl or boy when she was born. But, you know, and I found out at this point, but everyone was like, don’t talk about it. Like, I think if we can push past the isolation. We can realize that first, this is actually a lot more common. There’s a lot of support available. There are a lot of folks who are in the same spot who are and who want to help others because they’ve been in that position of that isolation. And they’re like, we don’t want other people to go through that. And recognizing, too, that like, you know, I think first overcoming that isolation. But then for some folks, it isn’t. Finding their place within activism is a really important part of dealing with what has happened.

Dr. Rebecca Dekker – 00:47:09:

Mm-hmm.

Catherine Clune-Taylor – 00:47:10:

Right.

Dr. Rebecca Dekker – 00:47:11:

Right.

Niki Khanna – 00:47:12:

Like on whatever level people want to participate in that.

Catherine Clune-Taylor – 00:47:15:

Totally.

Niki Khanna – 00:47:16:

So everyone doesn’t have to be a professional intersex person, which is what I call myself, right? A professional intersex person. Everyone doesn’t have to do that, but they could find one other intersex person that’s younger than them that they could talk to, right? Like whatever it is. So most of us look at this as like work that we do that we wish had been done for us when we were a kid. So we sort of like, even if it’s for one person or if it’s for crowds of people or if it’s around systemic change, whatever it is. And another point I wanted to add is that if you are a parent or like a caregiver of a child and surgical interventions have already been done and you feel like it’s too late, I can’t do anything. You know, it’s not too late. You can still like connect with people, InterConnect, and your child can still have a support group. You can talk to other parents who have done something, who have like made similar decisions and are like rethinking those decisions. Right. I don’t want to like make anyone the enemy or to cut people off. I know that every parent makes a decision from a place of like, I thought I was doing the best thing for my child. I was told I was doing the best thing for my child. So I don’t want to demonize anyone or like cut them out from access from that same support. Right. And so you also, those parents can receive support from InterConnect. You can be connected with other parents. And that can be something that’s also very resourcing for people as well.

Dr. Rebecca Dekker – 00:48:52:

So important. Thank you so much, Niki and Catherine, for coming on the podcast. I know our listeners are going to learn so much from this conversation. And I also want to encourage people, if you’re still wanting to learn more about the subject, check out InterACT and InterConnect. Also, just going on YouTube, there’s at least five relatively new documentaries on intersex communities that have been published in the last couple of years. And they’re fantastic. And you can learn a lot through listening to stories there. So thank you again, Niki and Catherine.

Niki Khanna – 00:49:21:

Thank you.

Dr. Rebecca Dekker – 00:49:23:

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