Meet the Guest
Diana Love RN, BSN
Diana Love, RN: Diana (they/them/theirs) is a PhD student at the School of Nursing, UW-Madison. They have 18 years of experience as a public health nurse with a focus on sexual and reproductive health, racial equity, and LGBTQIA+ health justice. Their passion for this work grows from the experiences they’ve had in healthcare systems as both a provider and as a queer nonbinary patient; from both these perspectives, they recognize the million and one ways our healthcare systems are not designed to be person-centered. Diana is deeply committed to research that contributes to ending the practice of cosmetic genital surgery on infants and children with intersex traits, with the recognition that most healthcare providers are taught and adhere to binary systems of sex, gender, and sexuality. Those belief systems create harm for LGBTQIA+ people within healthcare, and Diana is dedicated to producing knowledge that expands healthcare providers and scientists’ views on binary sex, gender and sexuality. Diana firmly believes that healthcare providers need more stories of queer joy and liberation to break free from their negative assumptions about LGBTQIA+ people’s lives.
- Historically, folks with intersex traits were viewed as shameful i.e. don’t tell anyone, especially the children, doctors said they will just “fix” the genitals.
- Some people don’t realize they are intersex until they are older.
- You likely see patients with intersex traits and do not even know, so assume you will care for patients with intersex traits.
- Intersex people are not typically accounted for as forms ask only about male or female-no one asks about intersex traits. However, intersex traits are about as common as redheads- 1.6% of the population.
- Intersex traits are a natural variation.
- No evidence that surgeries fix or reduce stigma experienced later in life.
- Don’t make assumptions based on how a patient presents
- Communication tips:
- Ask what does that mean for you?
- Say I’d like to hear your story.
- Inquire about a history of medical trauma (but don’t take this personally). Empathize and apologize for other providers.
- Ask what do you want and what are your goals and what is the best way to get you there?
- Use an organ inventory instead of asking if they are male or female. For example: what sex organs do you have? What do you use to have sex? What do you need to make a family?
- Delay discussion about genital surgery until the patient is old enough to decide. Don’t think about surgery as a solution. Kids start to develop gender identity around 4-5 years old. Kids who socially transition have fewer psychosocial issues.
Main Questions Asked
- Can you start by explaining to our listeners what does it mean to be a person with intersex traits and how common this trait is in the population?
- Historically, how have people with intersex traits been treated and cared for by clinicians?
- When we think about our current healthcare system, what challenges do folks with intersex traits have when navigating the healthcare system?
- How can surgeons or other providers discuss care for infants with intersex traits?
- What communication tips do you have for clinicians who have patients with intersex traits?
- What change can clinicians make to ensure their practice is more inclusive for folks with intersex traits?
- We have a growing number of listeners who do not identify as clinicians, what would you like to share with people with intersex traits and other folks?
- What is one thing you want all clinicians to know about folks with intersex traits?
- Where can listeners go to learn more about providing care to patients with intersex traits?
Transcript (transcripts are generated via AI software)
[00:00:00] Nicole: Hi everybody. And welcome to the woman-centered health podcast. Today. We are speaking with Diana Love a nurse and PhD student from university of Wisconsin. School of nursing, about healthcare experiences of people with intersex traits.
[00:00:14] Nicole: We also wanna let our listeners know that we are undergoing some strategic changes so that we can improve our listener experience and streamline our processes. We’ll no longer be offering our traditional show notes and we’ll instead include takeaways, resources and transcripts directly on our website.
[00:00:31] Nicole: However, we would still love and appreciate your support. And you can find ways to support us on our website by going to www dot woman-centered health.com and clicking the support us tab. Also, if you missed our big news, nurses can now earn CE for listening to the woman-centered health podcast. Just check out my C hq.com or download the CQ app or visit our website www dot woman-centered health.com to learn more.
[00:01:01] Nicole: And I am recording with my tiny person. You may, I’m giggling in the background and I apologize for my foggy voice. My promise. I don’t feel as bad as I sound.
[00:01:12] Stephanie: Hi Diana, thank you so much for being on our podcast today. so the first question we always ask our guests is if you can share with our listeners some details about your background,
[00:01:22] Diana Love: Sure thing and thank you so very much for having me. I’m so pleased to be here and I love your little gurgling human in the background. so I am a registered nurse. I have been a nurse for 23 years. most of my career I spent in public health, as a local public health department. And I mostly did sexual health healthcare while I was there.
I feel really blessed that in my time at public health, I got to really, do both, one-on-one contact with people, work with people directly, but also work at a systems and a policy level. And a lot of my systems and policy work really focused on the healthcare experiences and just impact of for LGBTQIA plus people in healthcare spaces and in the world in general, like what policies do we need to support queer people, that kind of stuff.
[00:02:04] Diana Love: So that’s a little bit of my background. Oh, and also I , I am a PhD student. I forgot about that part for half a second. It’s summer. Sorry. Y’all I, and I decided to come back for a PhD, just with the recognition that I wanted to make more impact in the processes and spaces that I knew needed to change healthcare is having some issues with addressing and dealing with queer people.
[00:02:26] Diana Love: That’s just the way it is. It’s just obviously happening. And I knew I wanted to do something to make an impact on that. And I landed on the healthcare experiences of people with intersex traits, with the recognition that these people are experiencing some pretty dramatic and traumatic healthcare processes on their bodies.
[00:02:42] Diana Love: They’ve been fighting really hard in advocacy and activist spaces to make some changes in healthcare practice, and they haven’t been very successful to date. And so I wanted to add what power and impact I could make to a group of people who are really fighting hard for their rights. That’s sort of how I landed on people with intersex straits.
[00:03:01] Stephanie: Well, yeah. And hopefully, you haven’t even done your dissertation yet, but getting this on a podcast, you’re disseminating your knowledge. So, to other people,
[00:03:10] Diana Love: excited to do it.
[00:03:11] Stephanie: Yeah. so the other question we always ask our guests is what informs your perspective. So in other words, why do you do what you do and what is most valuable to.
[00:03:21] Diana Love: Sure. I do what I do because I’m a queer person myself. I identify as queer for my sexuality. I’m also non-binary for my gender. and the non-binary piece relatively recent for me, but I was, have been exposed to my kid, identified as non-binary about maybe 10 years ago. so I’ve had just a lot of experiences with queer people in my life.
[00:03:41] Diana Love: Most of the people I know and hang out with are queer. and as a clinician who mostly served queer people, I just heard and saw a lot of the trauma and a lot of the negative experiences that people have when they’re seeking healthcare. A lot of stigma, a lot of shame. a lot of just not space made.
[00:03:57] Diana Love: Queer people in healthcare spaces, a lot of discrimination happens and that just leads to a lot of medical trauma for people. so that just as somebody who’s experienced it and also somebody who has seen it, I just something’s gotta happen. something’s gotta happen. And the recognition that healthcare systems are really inadequately trained, inadequately resourced, and really don’t have the information they need to address and deal with the healthcare needs of people with intersex traits or queer people in general.
so I am really excited about providing the evidence needed and hopefully the education needed as well for us to sort of start to turn some of these systems towards justice towards care that actually meets people where they’re at and the care that they need.
[00:04:40] Nicole: Diana, you are speaking a lot of our love language, and we are very excited to be speaking with you today. I think I can speak on behalf of Stephanie and I, that we are like, To all of that, that you said all right. So like we said today, we’re gonna talk about healthcare for folks with intersex traits. So let’s jump right in.
[00:04:58] Nicole: Our first question is, is, can you start by explaining to our listeners, what does it mean to be a person with intersex traits and how common is this?
[00:05:09] Diana Love: Sure. That’s a really great question. intersex traits are an umbrella term that describes many different pathways and experiences that people who have variations in sex trait development. So this could be things like gonads, ovaries, or testes, genitals, external genitals, reproductive organs, and then secondary sex traits.
[00:05:26] Diana Love: Things like. breast tissue development, fat and muscle distribution, all those kind of things are what we call falling under the sex trait, umbrella and intersex variations or intersex traits are some way some pathway that there’s been some variation in that process while somebody is developing or during the course of their life.
[00:05:43] Diana Love: So sometimes people will be born and not recognize they have an intersex trait, have some variation that will start to express during adolescence or puberty. So it could be a trait that is experienced across the lifespan. It doesn’t always happen to people in their infancy or not known about an infancy.
and the best estimate we have, nobody is accurately assessed or counted, uh, intersex traits. There’s been attempts over the course of many years. and so the best estimate we have is about 1.6% of the population is born with some variation in, in sex trait development. And that is about equivalent to the number of redheads.
[00:06:16] Diana Love: So it’s not a tiny number of people. and so that’s why I think it’s just important to really consider and think about how does healthcare happen for these people and what can we do to start making healthcare systems more, responsive and more accepting of people with some variation in their body traits?
[00:06:33] Stephanie: so historically how have people with intersex traits been treated and cared for by clinicians?
[00:06:40] Diana Love: So there is, a historical pattern that is actually really horrendous to talk about, but I think is really important for people to understand why we’re at the point we’re at, with, with, care for people with intersex traits. Historically, it was so shameful that people were literally counseled. Don’t tell anybody.
don’t talk about the intersex trait with your child who has this intersex trait. We are gonna fix these genitals and just never talk about it again. Don’t let anybody know. there was just so much shame and so much stigma that literally the approach of, of providers was to hide it and to pretend it didn’t exist, try their best to fix it, and then assume that people will be fine with the gender or sex that we’ve assigned them throughout their life, and then not think anything or have any issues with stigma if they just don’t even know, which is ridiculous.
[00:07:32] Diana Love: Of course, so insane. I can hardly even stand the thought of it because of course, what happened is people would become adults and then realize at some point, Hey, you know, I’ve had all these genital exams all my life because they did surgery. Now we have to check on how the surgery is doing. and so I, I inherently understood something was wrong.
[00:07:52] Diana Love: With my genitals, right? That’s the message people get is that there’s something wrong with me. I knew there was something wrong with me. I just didn’t know what it was. And so people would start to find their medical records, discover this about themselves, and then have these terrible crises of understanding, shame, fear, pain, anger, just a lot of disruptive, really hard to deal with kind of experiences.
and the intersex activist movie was actually born out of that process with people realizing, oh my God, I have been lied to my whole life by every provider I’ve ever seen. My parents, my family, they just lied to me. And a lot of people realizing at some point I didn’t even want the surgery. I would’ve preferred the body I had.
[00:08:35] Diana Love: Would’ve used it just fine. and early on the attempts, the most common types of genital surgeries are really, vaginal and, oral surgeries for people who have,congenital adrenal hyperplasia, which is like an overbuilding or over functioning. So that people end up with too much testosterone they’re they have female,chromosomes XX chromosomes, but they end up with a lot of testosterone.
[00:08:56] Diana Love: Their body ends up with a lot of testosterone. And so they’re, genitals are like their, their clitoris is larger, their genital opening or their, their vaginal opening may not be at exactly the same shape that we’re typically associating with females. So what they used to do is literally take the clitoris and chop it off.
[00:09:11] Diana Love: It would literally chop the whole thing off and then create a vaginal opening, in babies, in infants. And then you have to, you know, as anybody who’s had any sort of vaginal issues would know, you have to dilate that to keep it open. So you’re literally dilating and inserting things in a baby’s vaginas, just, yeah, it’s a horrifying process.
[00:09:30] Diana Love: So that was historically, I would say currently, there’s less of the. Belief that we should hide the traits. So people are less likely to do that. That’s very uncommon now. So at least people and providers will talk about it, but there’s still an absolute reliance on fixing the appearance of people’s genitals very early on in order to reduce stigma, that’s sort of the approach to it.
[00:09:53] Diana Love: Unfortunately, there’s zero evidence. That’s. Really, unfortunately, there’s zero evidence. That, that, that surgery is a way to fix stigma that fixing in appearance actually changes that stigmatized experience for other people. And the orientation is really around how do we make parents comfortable with this child who has a natural variation in their body type instead of just recognizing your child has a natural variation in your body type that’s okay.
[00:10:18] Diana Love: That happens sometimes about 1.6% of the time. And here are some other people in a peer support group who have also dealt with this and can help you as you directly address and go through your life. So you can educate the people around you and you can feel more comfortable and not ashamed or stigmatized by this experience.
[00:10:36] Diana Love: Your child is having children also need those that support. But not until they’re a little bit older. but there are ways to just help people recognize that’s a normal body type. It happens and it’s okay. It won’t harm you to have a body that looks a little bit different than other people’s and we’ll just wait and see what happens as you grow older to see if you do want surgery that works for the kind of sex you wanna have in your life later on when you’re an adult.
[00:11:01] Nicole: You touched on some of this already, but when we think about our current healthcare system, what challenges do folks with intersex traits have when navigating the healthcare system?
[00:11:12] Diana Love: So I’ll start with the very first and most obvious one. We aren’t, they aren’t counted. Right? Nobody asks, if you have an intersex trait, you are asked if you are male or female, which is using, asking a sex term, using gender words, and then you are not asked about your gender or perhaps in some places you are asked if you have a gender identity that is outside of these male and female words.
and then that’s pretty much that’s, that’s it? Nobody is asking or assessing a if, if you have an inters straight intersex trait, so you’re not even counted, there is no language to, make space for your experience in healthcare forms, in healthcare processes, in EHRs, electronic health records and very little honestly, in providers language.
I think probably the most difficult part and the most stigmatizing part is this focus on fixing like you are taking somebody who has a natural variation. This has happened because of their way, their body. Forming and focusing on how do I make it look normal, like other peoples, instead of just focusing on what do you need to make your way through your world and your life as healthy and as happy as you can be, the focus is not on how do we approach what you need from your very unique and in individualized perspective, it’s very much on fixing and normalizing genital appearance so that other people are comfortable.
[00:12:32] Diana Love: Really. It’s more of a focus on other people than on their own bodies and their own needs. So patient centered care is my primary number. One thing I would say about working with anybody that is not that you’re not familiar with focus on who they are, what they want, what they need and how do we get there.
[00:12:50] Diana Love: And those are the only conversations we need to be having in healthcare.
[00:12:53] Stephanie: So can I, I wanted to go back to the historical piece and I don’t remember the story exactly, but I was, after talking with you the first time, I started to Google more about intersex trait and came across like the ma you know, the top website.
[00:13:09] Stephanie: I can’t think of the name. I’m sure you okay. Yeah. Interact. And I talked about this story of, I think it was a man who’s kind of like a. You know, well, like in history was well known, sort of. Yeah. Can you talk about that story?
[00:13:26] Diana Love: you’re talking about John money, . Oh God, that oh God. I actually learned about John money before I’d ever even recognized anything about people with intersex traits, because he very much focused on this concept that, that children are tabula RAA as far as gender identity comes.
[00:13:38] Diana Love: So they come a blank slate. There’s nothing about them before they are born, that would indicate or, make you assume that their gender is inherent, that you can place gender on the top of somebody through social conditioning alone. And that, that will make them whatever gender they are. Right. That’s that was his belief.
and he is very prominent psychologist, very well regarded, very well respected and, and had a lot of money. He worked for John Hopkins as a matter of fact. So John Hopkins is very much the driving force behind this experience of surgery and shaming and hiding for people with intersex traits. They’re very prominent in that process.
[00:14:13] Diana Love: So the story that everybody talks about is David. So John money had a case, relatively early on, or maybe mid of his career, they’re two boys they’re twins. They were born in Canada and David, had a botch circumcision. So his circumcision was so like, his circumstances really destroyed his penis to the point that they did not think they could save it.
[00:14:34] Diana Love: And so they wanted to just remove his penis. And, John money was, introduced to these parents in this family. And his approach was we’ll make David into a girl. we’ll just never tell him that that’s not what’s happening. he’s a girl. You act like he’s a girl. You always act like that. You dress him as a girl.
[00:14:51] Diana Love: He’ll come to my clinic in Baltimore and will make sure that he ends up a girl. Don’t worry about it. We’ll we’ll make sure that happens. Like preceded to happen is,John money had like very little academic support for his belief system. He just believed it so strongly that he was certain he was accurate.
so we would have these, these brothers come to his, his clinic and then they would do things like play act, sex positions as male and female to reinforce. These are brothers, mind you, these are siblings. And to reinforce that David was a female and that the other, the brother was a boy and that they, this is how women and men together had sex, that they would imitate sex acts fully clothed.
[00:15:31] Diana Love: But, you know, I mean, it’s, it’s horrifying the sexual abuse that happened to these children. All along this child who eventually chose a name of David, was trying to express no, I’m not a girl. I know I’m not a girl. Something’s wrong. I, this isn’t right. I’m not a girl. I don’t understand why you all insist on this.
[00:15:50] Diana Love: He was quite suicidal and had a lot of, trauma during his life. and even while, John money was publishing and insisting that his theory of gender as a tabula Rossa was correct. And very good. Even while he knew that this wasn’t working for this kid, David, he still published. He still talked about his theory.
[00:16:09] Diana Love: He still continued to push his concepts and he just really never came back and said, well, actually it turns out I was wrong. That that’s not the way this happens. And that lots of people can’t just have gender placed on top of them and, and treated that way, their whole lives and have that just function as an actual way that this works.
[00:16:29] Diana Love: Unfortunately though, the intersex, surgical community who treats people with intersex traits really embraced this concept. I think for them, it was a simplistic, straightforward wage to address what they consider to be this terrible . Shameful and stigmatizing experience.
[00:16:43] Diana Love: And they all, well, here’s an easy answer. Let’s just stick with this one and we’ll just keep doing it well past the time when most other gender scholars had moved on from this concept, there was lots of evidence. It wasn’t actually true. They just kind of kept that in their minds and then operated and oriented around that from going forward.
so that’s the story of, oh, and the, the, the saddest piece of all is that David did end eventually end up, committing, committing suicide. his devastation was just so total, his trauma was just so total. He really tried, he got married. He, you know, he just did everything he could to have the life that he wanted and could, but he was so traumatized.
[00:17:19] Diana Love: He never really was able to heal from that. And that’s the legacy of John money. That’s the piece I want people to walk away from. His name should be dust should be dirt. He should never be used. He shouldn’t be quoted every time it comes up. It should be the legacy of John money is David died. Sorry. Get a little passionate about that one.
[00:17:37] Stephanie: all that see? Yeah. That I didn’t know all that. I, you know, the part I read was really short and I think it was more focused like on the, on David’s piece. And I remember, so he wasn’t necessarily born with inner
[00:17:51] Diana Love: Nope. Nope. Nope. He had a botch circumcision.
[00:17:54] Stephanie: yeah, but it, it it’s a good, it is like a example of. For intersex, for trans for non-binary like know, Just because our genitals look a certain doesn’t mean that we’re gonna behave a certain way or desire.
[00:18:11] Diana Love: Exactly. And I think that’s, that’s, that’s probably the most resounding message to walk away with is that there’s just so much natural variation, the way people experience sex, gender, and sexuality, and assuming a binary about any of those is just really inaccurate. Number one and stigmatizing number two, and then really harmful to people who experience some of this variation just for who as they are.
[00:18:35] Diana Love: Like, it’s just, it’s just so harmful to not have space made for you in clinical experiences to be denied, ignored, shamed, stigmatized, discriminated against it just causes a lot of harm. A lot of queer people avoid healthcare experiences entirely, just because of they they’ve experienced some sort of stigma or discrimination, or they’ve heard about it from other people.
[00:18:57] Diana Love: And so they just avoid going with the understanding that that will probably happen to me too. And I just can’t experience, I can’t deal with that. I’ve already got it so much from the world around me. I can’t deal with it inside of this space that is supposed to be there for me and my health. And all it does is add more problems.
[00:19:13] Nicole: trying to move forward from my mortification. Was wow, which I think actually kinda segues nicely into our next question is how can surgeons or other providers discuss care for infants with intersex traits?
[00:19:30] Diana Love: That’s a really great question. I’m so glad you asked it, is this sort, the, the crux of where change desperately needs to happen in the healthcare system. so I I’ll just directly express that this is coming from people with intersex straits, from the intersex activist community. so this is not my theory, my concepts.
[00:19:47] Diana Love: I am literally just saying what people with intersex S traits have been saying for over 20 years, and that is delay discussions about genital surgery until people are old enough to give information about their sex gendered sexuality, so they can make decisions for themselves on what or any surgeries that make sense for their lives and their bodies just straight up.
[00:20:06] Diana Love: Don’t just don’t offer it. Don’t think about it as a solution. Focus on what’s needed for the health of this baby, this child that’s in front of the, if I don’t think about their genitals, right? If their genitals or their reproductive organs, aren’t a part of the conversation. Unless there is something that is, needs to be addressed, like removal of urine or feces, or if there is some.
[00:20:32] Diana Love: Part of a body that’s gonna need to have a surgery because it’s gonna cause a problem later on those kinds of things should discuss. But genital and reproductive organ surgeries should not be happening on infants and children. Period. End of story. Stop hard. Don’t talk about it and please don’t offer it.
[00:20:51] Diana Love: They should be banned is my, is what the intersex community is really asking for. There are some of course variation within the intersex community. There’s an intersex activist community. That’s really exclusively, not exclusive, but pretty focused on banning all surgeries for infants and children. There are groups of people especially with people with congenital adrenal hyperplasia, they have a different sort of support system that they’ve developed from themselves.
[00:21:13] Diana Love: And that group of people are like, well, surgery isn’t always bad. And we would like the option. And so we don’t wanna talk about banning surgeries. We think that should be an individual and family decision with the focus on family, of course, because these are. Often surgery is done on infants and children.
[00:21:30] Diana Love: So the person doesn’t get any input into that conversation, but I wanna be clear that there are these different conversations happening within the intersex community. And I don’t wanna deny anybody their voice or their right to have their opinions and to speak about the care that they’d wish to have.
[00:21:45] Diana Love: Most people with intersex traits are more focused, I would say, on banning surgeries with a smaller group of people who are interested in saying, yeah, actually I liked the surgery I had. I thought it was helpful for me. I don’t see a problem with that. We’d like to keep that conversation on the table. some difference
[00:22:01] Diana Love: in that
[00:22:02] Nicole: what about like, as a clinician speaking to parents, then, like how can they frame these conversations? Cuz obviously this could be a big source of shame and stigma for a parent. So what can that conversation look like?
[00:22:16] Diana Love: Sure. And that’s just so wonderful. I think that, that you’re thinking about that as you’re holding your baby, I’m like, it’s beautiful, right? Parents of course have this experience as well. Right. And most of us have never been taught about what it means to have somebody with an intersex trait. We think about sex very much in two buckets, male or female.
[00:22:34] Diana Love: And this concept that there is something other than that, or there’s some experience that blends these, these sex traits in some people’s bodies is just a very foreign concept to, to most parents. Like, I didn’t know that could happen. I am very confused about this. I am scared. What does this mean for my child?
[00:22:51] Diana Love: I just want what’s best for my child. And so I would say the most important thing for clinicians to focus on is to read the research. number one, read the research. There is no evidence that surgeries impact stigma later on. No evidence at all that stigma reduces for people with intersex traits, just because they’ve had some normalizing surgery.
[00:23:12] Diana Love: So read the research. And the other piece is really talk to parents about natural variation bodies come in all sorts of shape, sizes and experiences. Natural variation occurs in multiple millions of pathways within bodies while they are forming your child has this type of natural variation. Sometimes later on in life, people decide that they wanna have surgeries to, adjust their genital appearance in a way that works for them or to create some, openings for sex, shall we to say, right.
[00:23:43] Diana Love: But that’s a decision that can be made later on when your child is ready to talk about those things. In the meantime, here is this lovely parent support group of people who also have this parents for people who also have these traits. And we would love to connect you with them so that you have people to talk with who have also shared this experience.
[00:24:02] Diana Love: I’d say it’s the exact same as it would be for a person born with any natural variation in their body. That is literally appearance only. It’s not a medical emergency. It’s not a critical thing to deal with right now. It is literally, you’re a little bit embarrassed because you didn’t know this could happen.
[00:24:18] Diana Love: And you think that a body should be shaped a certain way, but don’t worry about it too much. It’s okay. Here’s some people who have shared this experience and can help you talk about sex, and gender with your child, with your family, with your daycare, with the kids in your neighborhood. When your kid is old, love to start playing with their friends, tons of books, tons of resources for parents and, and kids.
[00:24:39] Diana Love: And just really focusing on this is a natural variation.
[00:24:43] Nicole: Quick, I don’t know, tangent. I wanna take cuz I think it’s important here. But you know, when you think of all the legislation that’s happening with trans folks as well, is this conversation that it’s like, they don’t believe that kids or children have the ability to discuss and like own their gender.
[00:25:03] Nicole: And so, I wonder if you could maybe speak to like the development space of like age of children when this may be appropriate or.
[00:25:13] Diana Love: There’s a lot of controversial about this, actually. So I think it’s a really fascinating question. It is not my area of expertise, so I’m not gonna act like I’m speaking at this, to this from an area of expertise. my understanding is, and this is just from, honestly, from being around a bunch of parents who have queer kids.
[00:25:30] Diana Love: so like more my lived experience than my, my academic or, or professional experience, is that that kids start to develop some gender identity awareness, somewhere around four to five, and that they can be aware of, as, as like a trans kid, like a recognition, oh, you keep calling me this thing and I don’t want to be called that thing.
[00:25:50] Diana Love: I actually think of myself this way. and that could actually start happening before four to five. I think kids are maybe able to articulate starting at four to five. and kids who identify as trans very young, typically are the kids. We’re gonna stick with it all the way through. So those are kids who recognize very early on.
[00:26:08] Diana Love: Nope. Actually I am not a girl I’m so boy, and, and as long as they’re allowed to social transition wear are hair, clothing, et cetera, that kind of matches that gender identity internally. Those kids generally just don’t have many psychosocial health problems. as long as they’re supported and allowed to express themselves, sometimes kids get a little older and they recognize, oh, actually it just turns out I was gay.
[00:26:29] Diana Love: I just didn’t have words to talk about that yet. So actually I’m not trans, I just feel like a boy because I like upper girls, like boys are supposed to like girls or whatever that, what, whatever that realization is. so I think the point is, is that it’s actually really individual. Sometimes people will recognize.
[00:26:46] Diana Love: Been their thirties, forties, fifties, sixties. Oh, shit. This weird thing. That was always just a little bit off about me that I couldn’t quite place turns out I was trans, like, I didn’t know how to talk about it. Think about it, be about it. But once I realized it and I made the decision to just accept it, people cognize, oh, all that anxiety, depression, fear, shame, embarrassment.
[00:27:12] Diana Love: All of that was wrapped up in these gender identity concepts that I didn’t even know how to talk about. So really transition and, and awareness of, of change in gender or, or variation in gender can happen across the lifespan. I think that’s the most important piece to talk about kids. Start a process of transitioning socially and then decide at some point, nah, it’s actually not exactly right.
[00:27:34] Diana Love: Or maybe I’m more non-binary and I don’t really need to change my appearance or my body or whatever. It, it happens across the lifespan. And I just wish we would take, take up the space and the recognition for people to be okay with that. Like I identify, like I spoke very early on. I identified as non-binary relatively late in my life just maybe two years ago.
[00:27:52] Diana Love: And it really, for me was a process of just recognizing, wow, I just don’t wanna click that damn woman button. I just don’t want to where’s my option, you know? And just continuing to get frustrated with never really having a box to check for something that felt like, how are you gonna decide some shit about me based on this box that I don’t even wanna check, but I can’t go on until I check one or two, you know, it just, it grew and grew and grew until I recognized, Hey, I actually don’t wanna be referred to as feminine with female pronouns.
[00:28:23] Diana Love: I prefer neutral pronouns of they and them. And that makes me feel more comfortable. Oddly, describe it all. It’s just such a, such an experience and it’s very, very, very individual and it happens across the lifespan.
[00:28:37] Stephanie: I love what, all the stuff that you just said. And I honestly, like, I feel a little, I don’t know, embarrassed that I never really thought about it that simply like check in a box and feeling uncomfortable about that. because you know, I haven’t had that lived experience, so I haven’t, and I think that it like really resonates. I know, like, just even, and especially like, we talked about this Dr. Mel Haer, whose episode is coming out today on neurodiversity and a lot of what you’re saying, like with the natural variations and gender and sex, like it’s the same, you know, it’s, it’s our brain, our brain is, has
[00:29:19] Diana Love: Natural
[00:29:19] Diana Love: variation
[00:29:21] Stephanie: natural variation.
[00:29:22] Stephanie: Yeah. Mel was talking about kind of the same thing, like realizing as an adult that you’re non-binary that you maybe like O on the autism spectrum or, you know, just like different, different ways that, you know, you might not really realize it until you’re older. And I know, like, I, I sometimes I’m like perplexed at adults coming out.
[00:29:44] Stephanie: Like, you well, you’re really liberal and like very, you know, like always celebrated pride and, and, but why didn’t you come out until now? And so those, like, that really makes a lot of sense to me, cuz I had always kind of been like confused. Like why didn’t you come out when you were 20 years?
[00:30:00] Stephanie: You know, because you’re pretty cool with that. Like, like I get people who maybe have a lot of shame with coming out, but it’s like, they just didn’t realize it because your mind is
[00:30:11] Stephanie: for whatever reason, your experience and you just have it, hasn’t it hasn’t connected.
[00:30:16] Diana Love: And I would say primarily why that happens and this is, this was true for me. I didn’t realize I was queer at all until in my mid twenties. And I had a sex dream with a woman. I was like, oh, Snap’s friend could do that. I was married to a man at the time, but so it literally, it literally took a dream of me having that kinda experience to be like, oh, oh, of course.
[00:30:37] Diana Love: Okay. Good to know. Good to know. I didn’t act on it for another eight years cause I was married. But then once I did, I was like, okay, no, I like this. Better. It turns out probably not actually BI, but they may be sexually a little bit BI, but I think the thing that really is most important to recognize is the reason I didn’t know is because I was BI enough.
[00:30:56] Diana Love: I was hetero enough and I grew up and I’m older. I’ll admit I’m 52, about to turn 53. So I was, I’m a gen Xer and my generation, the, the world I grew up in was just saturated. Just totally saturated with assumptions of heterosexuality. It was everywhere all the time. There were no media representation.
[00:31:17] Diana Love: There was no imagery. There was no talking about, nobody talked about sex that gay people had. Nobody talked about gay people at all. They didn’t even exist. I just didn’t know that I could be that way because it was so much a part of my. Growing up in my experience of figuring out who I was to be heterosexual, that’s just, everybody was heterosexual.
[00:31:38] Diana Love: And what’s funny is even as a kid, I, I had a gay uncle. I knew a gay uncle, but still, somehow everybody was heterosexual. Don’t ask me how that got in there, but it really did. It just took so long because I didn’t, I, I could swing that way. Well, enough that I just kind of went with that flow. That was just this overwhelming current.
[00:31:58] Diana Love: And it just kinda carried me along until my twenties sometime before my brain was like, Hey, wait a second. Just so you know, there could be some different stuff happening. You might wanna try it out at some point. So really it, it can be a process of not recognizing because of how norming our culture is around heterosexuality, binary, gender, and binary sex.
[00:32:21] Diana Love: They all go together. You’re born a, you’re born a man born a woman. You’ll be a man. You’ll be a woman and you’ll have sex with the opposite sex, always. Period. End of story. That’s just so much a part of who, how we think in this culture. It just is. And that’s a huge part of what I wanna change.
[00:32:37] Stephanie: I there’s this show that my husband and I watch on HBO called hacks.
[00:32:41] Diana Love: love hacks
[00:32:43] Stephanie: Oh my God. And, and the way they talk about sexuality and gender in that show, I just adore. But like, I think like the main, the younger main character, I know I’m totally blanking on their names right now, but like just kind of challenges the older woman, the comedian to be like, am I really like straight?
[00:33:05] Stephanie: Or is it just because like, did you just have sex with a man? Cuz you’re supposed to have sex with a man. Like,
[00:33:10] Diana Love: Yep.
[00:33:10] Stephanie: and I was like, I don’t really thought about it like that. Like, you could have fun, like just exploring and maybe you don’t like it, but try it out kind of a thing. And I was like, I never really thought about it that way, but yeah.
[00:33:23] Diana Love: Yeah. And I think that’s, and then, because it’s just been so much a part of our cultural story for so long breaking out of those bounds in your own mind take takes effort. It takes
[00:33:33] Stephanie: right. Yeah.
[00:33:35] Stephanie: Yeah. Well, thanks. That was a little deviation,
[00:33:38] Nicole: We’re We’re
[00:33:38] Nicole: so good at that.
[00:33:40] Stephanie: Okay. So you kind of talked about like what, how surgeons and providers can discuss care for intersex infants. What changes clan clinicians make to ensure their practice is more inclusive of people with intersex traits.
[00:33:54] Diana Love: So that’s a really wonderful question. I’m so glad you asked. So a lot of the focus in advocacy and activist spaces for people with intersex traits really does focus on battling surgeries and focusing on surgeries, but there’s also an emerging awareness and movement towards how do we, how do we approach care for people with intersex traits as adults?
[00:34:11] Diana Love: Like we’ve as, as, as. Academia and as clinical, providers focus so exclusively on infancy and childhood for so long that we haven’t really thought about what people with intersex traits would need as adults. Like literally they’re erased. Part of that is because the, the assumption of surgeons is though I erased that trait.
[00:34:30] Diana Love: It doesn’t exist anymore because I did surgery. So we there’s nothing that has to change in practice because the trait is pretty much gone. so I think the most important pieces, to think is, is to recognize 1.6% of the population has some of this natural variation. And to start asking better questions, write out the gate on your forms.
[00:34:53] Diana Love: Are you, so are you, male or female? Okay, fine. And, but you’re asking about sex, then let’s be clear. Are you male or female? Do you have an intersex trait? Why isn’t that a, a question on every inter intake form 1.6% of the population you think we should just ignore people who have intersex traits, you know, and generally the assumption or the, the numbers that we can find around who identifies as trans is that’s like 0.6% of the, the population so much less of the population identifies as trans.
[00:35:24] Diana Love: And we started to make some, some movement towards recognizing that people could be trans in healthcare spaces and asking about gender identity and having that be a separate question from sex and having the assumption that sex and gender flow from each other. So we’re just asking for some very simple adaptations to practice.
[00:35:40] Diana Love: Do you have an intersex trait? What type of trait? and, and then honestly, when you’re in person with that, you know, face to face as a provider with that person, what does that mean for you? Tell me about what that pro what that experience has been like. I’d like to hear your story, making space for people to share, and honestly, and authentically being okay with hearing about their medical trauma and not taking that personal right.
[00:36:03] Diana Love: This person is likely experienced a medical trauma in their life. You’re just gonna have to be able to hear that empathize with, with the patient in front of you apologize on behalf of the providers who did this inappropriately to you. And then move on to, what do you want? What are your goals? And what’s the best way we can get you there.
[00:36:24] Diana Love: Period. End of story. Just recognizing that people might have this experience making space for them to share your, their story, and then focusing on patient centered care. It is literally no more than patient-centered care, which should be happening for everybody who walks in the door. And that’s a huge part of our problem is we put people in boxes, cuz it’s simpler for clinicians and practices and organizations to deal with them in boxes.
[00:36:48] Diana Love: And we don’t really know how to bust out of that experience. I think as providers, I think it takes a lot of understanding that we’ve harmed people and that we have a lot of work to do. And that, that means I have to change how I understand and think about the.
[00:37:01] Diana Love: That’s a lot of it is internal work. I’m I’m asking you to do some internal work as a provider.
[00:37:05] Diana Love: I’m asking you to recognize, do I hold some stigma or some discrimination or some thoughts about, variation in sex traits or variation in gender identity or variation in sexuality? If I do, let me investigate why start to work on those and really start to, neutralize, how you talk about sex and gender in, in just more neutral terms.
[00:37:25] Diana Love: Don’t make assumptions about people who people are having sex with. No matter how they present, don’t make assumptions about how people, think about their gender, no matter how they present, you know, all of those things, you just have to start asking more questions and being more receptive and responsive to what people are giving you and really asking better questions on forms,
[00:37:44] Diana Love: especially.
[00:37:45] Nicole: wanna loop in a couple of episodes. And, but I do that, I hope that our listeners. Get this theme, cuz this is honestly in so many of our podcast episodes. It’s about internal work. Like so much of communication is internal work. So I hope that our listeners are getting sick of hearing that. Cause I mean, it really is in all of our episodes, but a couple episodes I wanna specifically mentioned is one that, Stephanie mentioned with Dr.
[00:38:11] Nicole: Houser and they had said it really great. They said, anytime that there’s a default, a system default, you are automatically not inclusive. And so the default, I feel like you’re talking about is that man woman, that’s the system default or any questions we may ask, we’re operating from a default.
[00:38:31] Nicole: And so we need to start challenging and identifying where those defaults exist. So that’s episode 59. For folks who maybe are just listen to us for the first time, the other episode that I’m not gonna remember the number of is medical violence with
[00:38:45] Nicole: storm brink. And we have an entire conversation about medical violence and how, clinicians can discuss that with patients and all of the things that you said, but, you know, maybe even deeper hour plus that we talk about that.
[00:39:01] Nicole: So for folks who wanna hear more about that and, and exploring that we have that episode as well.
[00:39:07] Diana Love: I can’t wait to listen to that one. I’m like, oh my God, I’m gonna have to check that one out. Just to have that, that in depth, nuanced conversation about this medical violence that I mostly read about, I’ve never experienced. So I, that would be lovely. I’m really grateful to know that is out there. Thank you.
[00:39:23] Stephanie: Yeah, and it also reminds so I, I don’t know if I’ve talked about this on our podcast before, I did work on a research study, at the VA and I don’t think any of it’s published but really what the, you know, the, what they, what the research team, the main aims kind of like what the experience for veterans building their and so it was this really long survey that was but one of the things we, the study team was really,was a real high priority for the study team is that this was gonna be a very inclusive study, including the, the so in order for it to be inclusive, we really had to get rid of that box.
[00:40:04] Stephanie: Like you’re saying, we couldn’t say, are you a man or a woman? Okay. Now we’re gonna ask you all the questions about uterus and cervix and ovaries, or, oh, you’re a man. We’re gonna ask you about your testicles. we had to get out of that because that’s not inclusive. and you know, I will say, so, you know, we took the survey from that traditional, like are email or female check check to a lot of but really what it gets down to. And I think maybe storm talked about this too, is what, what do you have? Like, it really doesn’t matter by like, I mean, I’m not gonna say it doesn’t matter. It doesn’t always matter to medicine based you know, or do you identify as trans or straight, you but what matters is what sex organs. Do you have, what sex organs do you have sex with? What, you know? And because that’s where, you know, the medical part comes in. So, you know, we need to start, I mean, you know, I even challenge people, like maybe you don’t even have those on your form. I know that’s like really out there, but it’s like, do you have a uterus?
[00:41:07] Stephanie: Yes or no? because there are women who don’t have so
[00:41:10] Diana Love: right.
[00:41:11] Stephanie: you know, are, do you have ovaries S or no? Do you have,
[00:41:15] Diana Love: So.
[00:41:15] Stephanie: know, testicles? Yes
[00:41:16] Diana Love: In the trans community, that’s known as an organ inventory and that’s exactly what needs to happen. The point that trans folks have been making to us. And, you know, I remember I told you, I worked in sexual health as a clinician at my local health department. So we, and, and I live in a pretty progressive city with a lot of queer people
[00:41:33] Diana Love: So we really did focus on queer sexual health. And we had that, that really grew out of sort of. HIV prevention and HIV work. So that really was a, a focused, we learned how to work very well early on in my career with, with men who have sex with other men, that part we’d gotten, we nailed that. Right.
[00:41:52] Diana Love: But at some point, as my kids started identifying as non-binary and the kinds of sex they were having were more queer. My kid is an adult. I use kid cuz I can’t use a gender term for them. So we were like a little bit stuck with my adult kid started telling me about the kinds of sex they were having.
[00:42:08] Diana Love: And I looked at my form and I’m like, damn, I would not have caught that there was a risk. I don’t have any way to assess. I don’t have any way to ask the right kinds of questions. We are failing these kids who don’t identify as really any of it be like, screw your boxes. Here’s what I do with whom and how and when, and that’s all I really wanna talk about.
[00:42:30] Diana Love: So we had a process, had to go through a process of really looking at our forms, figuring out when we ask sex, what are, why, why are we asking about sex? What are the assumptions we’re making? We ask about gender? Why, what are the assumptions we’re making? We ask about sexuality. Why, what are the assumptions we’re making?
[00:42:45] Diana Love: Who are we leading out by having boxes instead of just really asking people. So we moved to an organ inventory. We would ask, you know, what types of sex do you have with what types of body parts and what do you call those body parts? I’ll use that word for it. It doesn’t matter to me what you call it.
[00:43:01] Diana Love: I’ll use that word too. And then I will use my clinical process to understand what kinds of sexual risk you might have been at that I need to test for and perhaps treat you for. And that’s all that is. It’s just a process of figuring out what do you use? What do you do with it? And what kind of risk does that put you at?
[00:43:18] Diana Love: And that’s the risk pieces, of course, the sexual health conversation. And you’re like, what do you have? What do you use? And how do you make a, you know, make families with that process? Or what do you need to make a family? and I think the, or inventory is absolutely where it’s at. Just don’t assume the, or inventory will give you so much more information about what’s actually happening with somebody’s body.
[00:43:37] Diana Love: And then you could use that information appropriately to figure out what, what your clinical process is, what needs to happen, what steps are next, how do I address the
[00:43:45] Nicole: being kind of noisy.
[00:43:46] Diana Love: healthcare
[00:43:47] Nicole: wanna ask five, just see if there’s anything more there.
[00:43:51] Diana Love: it.
[00:44:02] Stephanie: Yeah. Yeah. given all of you know, in the organ inventory and, you know, treating adults with intersex traits and kids with intersex traits, can you kind of talk about like any communication tips that you have for clinic. With inter sex or clinicians who have patients who have intersex
[00:44:23] Stephanie: traits.
[00:44:24] Diana Love: I think the primary piece is, and we’ve touched on this with that conversation around that, doing the inner work, recognizing why you have assumptions and doing the inner work to sort of unpack those for yourself so that it isn’t something you lean on in the moment. That’s probably the most important piece.
[00:44:40] Diana Love: What goes along with that inner work then is that then you will more easily be able to ask an organ inventory and not feel weird about it. You’ll more easily be able to use gender neutral terms without thinking about it or having to, really challenge yourself to do it well. And you’ll be able to understand and think about people not as this is what a man looks like.
[00:44:59] Diana Love: This is what this person looks like and what do they need? Based on the body they have and the experience they’re having. That’s what we’re asking for. Do the inner work so that it’s not, you don’t lean on the assumptions or those boxes,
[00:45:17] Diana Love: so that when
[00:45:18] Diana Love: you talk to
[00:45:19] Nicole: for folks. If you’re fi trying to find ways to get more comfortable with that we do actually have, and I’m gonna forget the number as well, an episode with an improv person, Jonathan Garland, and who gave some really great tips and tricks on how to practice and get more comfortable, with, you know, maybespecifically about that, those kinds of things.
[00:45:39] Nicole: So if you’re looking for maybe. How do I practice this and not necessarilyon my patients? I would check out that episode,Dr.
[00:45:49] Nicole: Nicky, Julian.
[00:45:51] Diana Love: Please don’t practice on your patients. I mean, we all will at some point just because it’s new UN unfamiliar and it will take some time and process to get better at it, but please practice on people who aren’t harmed by your practicing much as you can. mm-hmm
[00:46:08] Stephanie: it also reminded me maybe of the sex shame stuff too. So if you’re feeling or shame on behalf of your patient or, or whatever, you have to do that internal work with why do I feel shame? it was Julian and I’m blanking on her last name. Oh, Dr. Nicki, Julian. Okay. Dr. Nicki, we had two episodes on but really the one is like how sex shame for clinicians, because if we have
[00:46:44] Diana Love: mm-hmm
[00:46:45] Stephanie: shame, which we all and we’re all but we we’ve all been socialized. Yeah, exactly. But we have to do that internal work on how to deal with our shame. So we don’t project that on to our patients because really that’s where I think a lot of
[00:46:59] Stephanie: things go
[00:47:00] Diana Love: Very much, so very much so. Yeah. And, and that’s that, that’s the piece like, right? That our culture is just so saturated with these binary concepts of sex, gender, and sexuality that any deviation or variation from that right. Does bring up feelings of shame for, in some people like, oh, that’s wrong.
[00:47:18] Diana Love: And why would you do that? And you know, those just kinds of concepts and, and yeah, and it does cause a lot of harm for people who are like, that’s literally my life. literally my life and I’m not ashamed of it, but I can tell you are, people can absolutely tell when somebody is uncomfortable with something and then they just won’t talk to you again.
[00:47:36] Diana Love: They won’t admit to you, they won’t, give you information that you need to care for them appropriately. Or they’ll just straight up leave and find another provider who doesn’t have that reaction. So you are
[00:47:46] Nicole: getting annoying, but we actually have another great episode.
[00:47:49] Diana Love: gonna drive your patients
[00:47:50] Nicole: that talks about what you’re talking about, where they just like won’t come back or they can sense the, that, and that was with, Frankie or Francis ley on language and pronouns and the impact of not using appropriate language and I think that conversation also loops in well with what you’re talking about.
[00:48:11] Diana Love: Yep. Yeah. Yep. Yep. I would say what’s interesting about people with intersex traits and their healthcare experiences is they do have a lot of overlap with several, activists and advocacy groups and a lot of just variation or a lot of overlap with different types of experiences. They have some common experiences with, with queer people, with LGBTQ people, just with that assumption of heterosexuality and what body parts go, where and how that all works, and that there is a binary sex, a binary gender, and a binary sexuality.
they have some overlaps with, the disability justice, movement. only the care I want. I would like to access that only the care I want. And I would like to be able to refuse care that I don’t want or does not serve me the body and the life I need and live in right now. and some overlaps with reproductive justice, you know, leave my reproductive.
[00:49:04] Diana Love: Parts alone so that I can make the decisions I need to make for my body and my life so that I can make families how I want to make a family, how, how, whatever that looks like. And I have the resources and the support to have pleasure and, you know, have pleasurable sex and to have whatever kind of sex I’m I want to and have whatever kind of reproductive, access that I need in order to have safely have the sex I wanna have.
[00:49:32] Diana Love: So I get it. There’s a lot of overlap. I think that’s why this, this conversation touches on so many of these various places is that intersex people carry and have so many of these, these experiences on their bodies. And they, they have learned how to talk very clearly about that. And that there’s just a lot of intersections with a lot of other types of experiences people are having in healthcare that are also learning how to start to fight and push back against these systems to make space for themselves.
[00:49:59] Stephanie: And the other thing that it reminded me, like Frankie talked so, you know, we have, you know, there’s probably clinicians who are just like, totally feel shame and judgment, you know, or make assumptions that everyone is heterosexual. And, you know, so there’s those clinicians, but there there’s other clinicians who are, you know, they think that they’re cool with all this.
but then they go, they take that to focusing on, That trait that they’re cool or that they wanna seem cool and I think she talked about you know, like a trans patient going because they’re yes. Broken arm and then like the provider is like taught, oh, talk to me about like, what kind of genitals do you have and who do you have sex with?
[00:50:50] Stephanie: And it’s like, I am not here for so I’m wondering like, if, if you can, if like intersex people experience that same,
[00:50:58] Stephanie: the people with intersex traits, if they kind of experience that same issue when they’re like, I’m not here for my sex organs right now.
[00:51:05] Diana Love: Literally. I mean, this is not even a joke, literally hundreds of stories of, oh, you have, you have an intersex trait. You’ve had surgery or not had surgery, whatever their experience is, you are now the model patient, every med student is coming through. Every provider is coming through. Everybody’s gonna do wanna look at your genitals.
[00:51:25] Diana Love: Like that’s this, this level of medical trauma that, that people experience is like, everybody wants to look at my goddamn genitals all the time. There’s something wrong. Like, even if you didn’t tell me that something was going on, I still pegged up that something is not right about my genitals. Cause everybody wants to look at them every time I come to see a provider.
[00:51:41] Diana Love: So there is, that does absolutely happen. And I think there’s some sense, like how providers get into that space is there’s some awareness of, oh, I don’t have this experience. I don’t understand it. I would like to understand it. And here’s this person right in front of me that could educate me. Answer to that is no, never please stop hard.
[00:52:00] Diana Love: Stop right there. Your patient should never be educating you about the experience that they’re having. You should have enough basic information to be able to ask the questions appropriately and be able to focus on their care and their needs. If you don’t have that information straight up, admit it right up front.
[00:52:15] Diana Love: Hey, look, I’ve actually never worked with somebody with this experience. So I’m gonna do my best. I hope I don’t mess it up. If I do. I would love for you to interrupt me and tell me what’s what, what I said that was not appropriate or that you would like me to change. And I will do my best to learn about this before the next time we meet so that I won’t take up our time together, focusing on what I should already.
[00:52:38] Diana Love: That’s really how I would suggest people, a approach that I understand. It’s natural curiosity. People feel like, oh, I’m good with this. I’m really interested. I’m curious, but your patient shouldn’t be educating. You ever. That’s what the internet is for . And Google has a remarkable number of personal stories that you can learn from.
[00:52:57] Diana Love: People do share their experiences and they do share their, their pain and their joy on the internet.
[00:53:03] Diana Love: And
[00:53:03] Diana Love: there are lots of
[00:53:04] Nicole: jumping to
[00:53:05] Diana Love: what it’s been like for trans folks or people with intersex traits
[00:53:08] Nicole: can you ask that? I feel like I’m running out of
[00:53:10] Diana Love: of ways to learn.
[00:53:12] Nicole: voice juice.
[00:53:25] Stephanie: Okay, of course. So, so I’m doing eight, is that you said I’m confused. Okay. So what is one thing that you really want all clinicians to take away from and. Knowing about people with inner sex trait.
[00:53:41] Diana Love: I think the most important thing to take away is that it’s not uncommon, right? The, the narrative in the medical community and the academic community is really, this is, these are rare traits, very small portion of the population. You don’t have to worry about it. We fixed it. Then we don’t have to talk about it anymore.
[00:53:59] Diana Love: Right? So, these are not rare and they, and you can’t assume what somebody has experienced or what their life has been like based on the checkbox of your forms, really that you have to make more space for people to tell you about their experiences. And that starts with. Do you identify or are you male, you know, ban or woman, male or female?
[00:54:21] Diana Love: Do you have an intersex trait? Tell me about your gender identity. Tell me about your sexuality on the forms. It has to start the very first time people reach out to a healthcare system, or they’re just not gonna use your services. Honestly, they’re gonna find somebody who is more responsive. So recognizing it’s not rare, recognizing you are likely have people with intersex traits have, have seen people with intersex traits throughout your practice, and you didn’t even know about it and that you are probably treating people.
[00:54:47] Diana Love: And, and you just don’t even know because you haven’t, asked the right kinds of questions. So assume that you will treat or care for people with intersex traits. And if you don’t know enough about the medical experience, there’s some great, great, great educational opportunities out there. Nowadays.
[00:55:04] Diana Love: Boston’s children’s hospital has done some really great work, and there will be some other resources I can link you to. I’m like, I can’t think of ’em all off the top of my head right now. Do do do the work yourself before you harm another patient would be the one thing I would say to take away from this.
[00:55:22] Stephanie: Yeah. Thank you. we also have a growing number of listeners who do not identify as clinicians. so what would you like to share with anyone and especially with people who have intersex traits or just other folks in.
[00:55:36] Diana Love: primary message that I hear from intersex, activists and advocates is, there’s nothing inherently wrong with having a natural variation of sex trait. There’s just nothing wrong about that. That is, it is a natural variation in body experience, period. That’s really all we have to say about it honestly, is how I feel about it.
[00:55:55] Diana Love: That if we just accept that this is an, a, a part of being human, and some people will have this natural experience, this natural variation and that sex, gender, and sexuality are things that can shift and move across the lifespan. And you can never assume anything about what somebody else has got going on until you do an organ inventory and you explicitly ask them that’s.
[00:56:18] Diana Love: I think the really, so just that natural variation happens. It’s normal. It’s fine. And we, if we expand our concepts of sex, gender, and sexuality, we can really start to recognize that that, that this binary, these binary assumptions don’t capture the experience of a significant portion of our population.
[00:56:37] Diana Love: And that is growing all the time. And that that’s internal work for us to do, right? That the, those concepts have been planted in our brains. They aren’t normal or natural or God given or whatever else you wanna say about that. They are not that way. They are actually inherently variant, just like every other body and experience on the planet.
[00:56:57] Diana Love: And that, that natural variation is actually beautiful. If we could just make some space for it in the world, instead of considering it wrong, shameful, afraid, whatever those, you know, processes are, then it’s just normal and natural. That’s what I really want people to recognize.
[00:57:14] Stephanie: That’s beautiful. I love that.
[00:57:16] Stephanie: okay. So you mentioned Bo or, sorry, you mentioned Boston children’s as a can you talk more about that resource and then it, what other,resources would you recommend where our listeners learn more care for people within our sex?
[00:57:31] Stephanie: sure. So I’m gonna start actually, with inter interact. so sorry, I’m actually looking up this training. No,
[00:57:40] Diana Love: Anyway. I’m like, okay, I’m not gonna be able to find it really quickly. So I’m gonna let that go. I, I, I, I’m pretty sure it’s Boston children’s and I can’t verify for sure. So we’ll leave that part out and we’ll come back to that. I will send you a link so that people can have that information. but the primary piece I wanna talk about is interact activists, act inter act.
[00:57:58] Diana Love: Advocates, sorry, that’s having a hard time coming outta my mouth, interact advocates. and that’s a webpage and this is, an advocacy and activist group of people. primarily people with intersex traits and their families who run this organization. and they do a lot of work, a lot, a lot, lot of work with media, with, you know, providers, with research, all sorts of things, to sort, sort of sort, really, help the whole world, understand about these natural variations and experience.
[00:58:25] Diana Love: And what’s most important for people with intersex traits. and it comes from the mouths of people with intersex traits. So that’s, I primarily focus on. Use interact advocates. They have great information for providers, for parents, for kids. just a lot of great stuff. They have. a lot of, they work a lot with youth, and do a lot of, advocacy work with youth and leadership work with youth.
[00:58:45] Diana Love: So there’s a lot, there’s a very much a focus on how do we build up people with intersex traits as youth to do this leadership and advocacy work. the other, place I would point people to, and especially if you’re interested in potentially working, with your hospital to stop these surgeries from happening, would be the intersex justice project.
[00:59:02] Diana Love: So this is,intersects people, led organization. They are both people of color. and so this is really just an organization. That’s very much focused on, pressure, you know, social and political pressure on organizations that won’t ban surgeries. And they have a whole process that they work with people to, to, to really orient around or really work P publicly on stopping intersex surgeries.
there have been two hospitals that have banned some of these procedures on infants in children. Boston children’s is one. The other is Lu, children’s hospital in Chicago. And both of those places only enacted those bands because of the activism of the intersex justice project they had. there was a combination of inside and outside pressure.
[00:59:43] Diana Love: So they had some clinicians internally who were starting to resist these practices and processes. People who identify as queer or who are advo allies with queer people recognizing this is not right. I won’t participate. We need to change this. And then outside pressure from, intersex justice project.
[00:59:59] Diana Love: And, you know, they’ll come and they’ll chant and hold signs and make a big bunch of noise. But those, I think a combination of inside and outside pressure is what actually changes practice. and we’ve seen it successfully happen in two hospitals. so I. Encourage people to, to pay attention, to and follow the lead of people with intersex traits and particularly these people who are at the edge of that activist work, and, and people of color doing that work.
[01:00:24] Diana Love: So intersex justice project. and there’s also, it’s important to recognize that, like I said, there are hundreds of variations in ways to have this natural variation in the body occur. there are many syndromes, and each of these kinds of syndromes or, names that we give to a type of experience or process, most of them also have an advocacy organization oriented just around this experience.
[01:00:45] Diana Love: So if it’s a specific type of trait, then there are, places where you can learn more, get peer support, get parent support that are specific to a type of trait. So those, types of,Oh, sorry. so there are websites out there that are specific to each type of trade. I can send you a list of those.
but the primary piece that I want people to walk away from and understand is people with intersex traits have been battling this as activists and advocates for a really long time. Over 20 years, they should be leading this work. We can, as people who want to change this experience for people line up behind them and give our ally support.
[01:01:23] Diana Love: And it is important that we do that. And if you wanna know more about people with intersex traits, please listen to it directly from them, their experience. Don’t read the medical literature. It’s horrifying.
[01:01:37] Stephanie: Yes. Yeah. Thank you. That’s a really great and you’ll, we’ll supply those links on our website when release this especially I think that would be helpful you know, you, I mentioned earlier in the episode,if a, if a parent has a baby with intersex the provider can say there’s a support group for so you know, providers probably want to know the specific support groups that
[01:02:03] Diana Love: Yep. Yep. Those are really, those are really important. What’s fascinating is I’m currently in process of working with a group of people to, try and change surgical practice at our hospital, our children’s hospital here. And so we are in conversation with the urology providers. It’s primarily the urologists who do these surgeries and they’re just so.
[01:02:26] Diana Love: Disconnected, I guess is the word I would use so disconnected from their impact on the, the patient, the person they’re actually doing the surgery on the focus is so exclusively on the parents. And because these are primarily straight CIS people, they literally do not understand how that impacts how they show up or how they understand the world.
[01:02:47] Diana Love: And they are, they they’re carrying shame in themselves. They’re like I would be mortified if that were my body or my baby, I would be horrified that my baby had genitalia that I didn’t expect. I would want surgery right now. Absolutely. I would want surgery. I think that’s what’s best for people. And anybody who doesn’t want that.
[01:03:08] Diana Love: Well, that’s, they’ll just have to figure out how to live in a very hostile world that will just stigmatize and shame them their entire lives. And we think that’s wrong. So , I don’t even know how I started out that conversation. but that, that when we’re, when you’re talking that that providers have these shame, the shame, the stigma inside of them, and that’s why it’s so hard to talk to parents.
[01:03:30] Diana Love: Honestly, I think that they literally can’t comprehend what it would be like to raise a child with vari sex traits. They wouldn’t, they don’t know how, and because they don’t know how it’s not possible. It’s just not possible in their worldview.
[01:04:12] Diana Love: the daycare providers think what happens. What happens when that child has to go to school and change for gym class, serious, dead serious. And, you know, there are some conversations to be had about how we gender slash sex, binary, changing processes, how we assume this experience for, you know, that there are boys and girls only, and that they should be separated and put into a large space where they can be tortured by each other for any natural variation in their body, whatever, across all sorts of spectrums.
[01:04:45] Diana Love: I mean, I remembered middle school and it horrifying it horrifying to change in the lockeroom together.
[01:04:51] Nicole: And, And what’s funny, is in your life, are you every going to do this, like this isn’t prepping you for the world in some way. Like we don’t collaboratively get dressed anywhere else.
[01:05:11] Diana Love: no, no, no, no, no. And no, no, you don’t never right. Really never. And you’re gonna get some, some level of like, right. Some level of picking on, based on the body you have just for having a body, honest to God is the truth about that experience in changing rooms in middle school, perhaps we should stop making children’s change clothes and be naked in middle school.
[01:05:41] Stephanie: know, in the most vulnerable time in their life. Yeah.
[01:05:44] Diana Love: That’s the, that’s the answer?
[01:05:47] Stephanie: I’m like the old ladies at the gym. Sure. Don’t care about.
[01:05:51] Diana Love: Nope. Nope. They sure don’t
[01:05:53] Stephanie: And more power to ’em, you know, but then it’s like, yeah, when you’re in middle school, you’re like mortified, but that’s like the only time in your life where you really are supposed to do that or have to do
[01:06:04] Diana Love: on those. They focus on those experiences as if they would be the most horrifying experience to ever have, and their job is to fix it. So it doesn’t happen. That’s really the orientation. They just, they literally can’t imagine a world where somebody with a naturally variant sex trait could live happily, even though , even though they’re trans folks all over the world now who have exogenous hormones that shift and change their sex trait, their external sex trait experiences enough that they’re now in this kind of sometimes gray area.
[01:06:36] Diana Love: And those people are happily having those bodies and happily having sex with all kinds of people and not really having a problem. Right. That’s that’s the piece I’m like, we either are already adults having this experience who could tell you how it’s not bad. In fact, most people have no problems and in fact, they have great sex and they’re happy to, and they would, they love the body.
[01:06:57] Diana Love: They have, they don’t really, they, you know, they, lots of people with intersex straight. A few people I’ll be clear. Mostly people have surgery very early on before there’s any conversation or any way to give input. But a few people sort of escape the system. They have parents who are, aware enough who are like, no, I don’t think surgery is necessary.
[01:07:15] Diana Love: Or parents who are just like, yeah, I think that’s full of shit. I’m just like gonna ignore what you say kind of thing. and those people do come out with genitals born the way they are. And mostly those stories are incredible.
[01:07:33] Nicole: I can’t remember where it came from, but there is a quote from but it talks about like a flower, like when there’s something wrong with the flower or something’s happening with the flower so much, we focus on the flower and trying to fix the flower when really we need to be focusing on the environment the flower is in.
[01:07:47] Nicole: And I think that’s what you’re speaking to is like, we’ve become, so person-centered that we have to fix this person when it’s really, we need to fix the environment and the social world that we live in.
[01:08:00] Diana Love: That’s exactly. Yeah. Yep, yep. Yes. My favorite chant that intersex justice project uses is fix your heart’s not our parts. And I think that succinctly nails, it really fix how you think about me. Don’t fix me. I’m not a problem. Really just makes some space for me in the world. And I’m happy.
[01:09:33] Stephanie: So Dr. Mel Houser brought up the social model of disability and the things that you’re saying are really similar. It’s, it’s not the environment or it’s not the person and their disabilities that we have to fix. It’s the environment and making the environment accessible,for everybody. And you know, those, those disabilities in the individual don’t matter when they can access things in the environment. So that it kind of all just, I think, ni ties in a nice with the episode that’s come out
[01:10:12] Diana Love: Yep. Yes. Yes. That’s and that’s beautiful. That’s ex those intersections. Again, those, all those places that these people with intersex traits have these intersections with different types of experiences. But at the end of the day, most of them are really coming down to there’s nothing wrong with me. What’s wrong. Is your system, fix your system and I’m fine.
[01:11:03] Stephanie: Great. Okay. All right. So Diana, I would personally like to thank you so much for your time and commitment to advancing sexual and reproductive health through communication. Do you have any last thoughts that you would like to add before we end?
[01:11:18] Diana Love: I would just like to say, I think I just like to leave people with this understanding that it is possible to, to change systems and change processes and change ourselves so that we are more inclusive. And that is my hope for all of us. Honestly, I just it’s possible. It takes effort.
[01:11:38] Diana Love: It takes work, but doing that work, putting in that effort actually leads to really more beautiful world for everyone. So I hope we do.
[01:11:48] Stephanie: it reminds me of, so how Diana and I that reminds me, so I was presenting at a conference on implementation science and so nothing to do with sexual reproductive healthcare or communication really. But Diana asked a question that sort of blew everybody’s mind.
[01:12:13] Diana Love: I did.
[01:12:15] Stephanie: Diana asked a during my presentation or after the presentation about de implementing, like how do we de implement all these structures? Like systemic racism being, you know, the, the, you know, I think we talked a lot about just in this episode, that male, female box, like we have to de implement that out of our, out of our, experiences because those aren’t serving us anymore.
[01:12:48] Stephanie: So really it does come down to a de implementation and it was kind of this, like, you know, we’re talking about like, how do you de implement? I don’t know, like turning patients, you know, or not turning patients or, you know, Bed alarms. like we think about really hospital, like quality improvement stuff, but you ask this like, Huge question. And I was like, that makes so much sense, but I have no idea the answer
[01:13:14] Diana Love: I know 90% of my questions I ask and I have no idea how to get to the, an, to the question to the answer. I’m just really curious about the question. And for me, it was like, oh wait, all of a sudden it occurred to me. There’s a science here. You all have been looking about how to change. Stop.
[01:13:29] Diana Love: Adjust move healthcare processes and systems. You have the science, how do we put that science into place into action around these systems of oppression that are inherent to our processes in healthcare, racism, sexism, homophobia, transphobia, all these normed centered experiences of white CI CED. People are they’re just compacted and wound deeply into everything we do in healthcare systems.
[01:13:56] Diana Love: How do we use the, the science of de implementation to start to really undo those systems of oppression as they show up in healthcare? That’s that’s my question. I’m like really curious. I don’t know the answer still yet, but I’m curious.
[01:14:08] Stephanie: Well, that is a whole line of research that we need to start doing. so let’s get
[01:14:14] Diana Love: all right. There you go. Good. Good thing of getting that PhD.
[01:14:17] Stephanie: yeah. Yeah.
[01:14:20] Diana Love: yeah.
[01:14:20] Stephanie: All right. Well, thank you so much,