#6: Intersex Surgery: the Fight for Bodily Autonomy
COMMUNITY VOICE: Sean Saifa Wall | HEALTHCARE EXPERTS: Julie Greenberg JD, IW Gregorio MD | COMMUNITY REVIEWER: Hans Lindahl
THE HOMIES
We promised a list of institutions, organizations, and advocates who say absolutely no non-medically necessary surgeries on intersex infants:
SHOW NOTES
Heads up
This episode is best listened to (or read) after our other one about the intersex community.
Content warning – some of the discussion around surgeries is considered violent given their non-consensual nature
What makes a surgery medically necessary (and therefore ethical)?
A “rule of thumb” definition is: will not intervening cause the loss of life or limb
Some mythbusting for you:
Some gonadectomies – or the removal (-ectomy) of the gonads (anatomical precursors to the ovaries or testes) – have been justified to avoid the tissue becoming cancerous. That would imply they might be medically necessary. But, a 2016 consensus paper on DSD care said there is “poor evidence” to support that.
A surgery done for the sake of the psychosocial distress of the parents? Not medically necessary.
Definitions:
Hypospadias: when opening of where urine comes out is not at the very tip of the penis.
Congenital Adrenal Hyperplasia: where a missing enzyme creates more testosterone and the clitoris is often enlarged
There are others, but these are two of the main variations that folks who have experienced non-consensual surgeries have.
The past, the present:
1950s-1990s: John Money: a child’s gender identity would follow the anatomy of its genitalia, so if you change the appearance of the genitalia you resolve any internal ambiguity around gender identity.
Now:
Most current surgeons who perform these reject the reasoning presented in the historical paradigm, and they know that genital appearance doesn’t dictate gender identity.
One current common justification for surgery is that it can alleviate the emotional distress from someone’s variation
Many variations in genitals are defined as pathologic due to cultural definitions and expectations that people will want to have heterosexual penetrative sex.
Example: a penis that can’t penetrate isn’t a penis
Example: a clitoris that is too big….is too big
An ethicist’s takedown of surgeries performed on intersex minors
Surgery done for a variation that isn’t life or limb threatening and done to improve psychosocial (meaning emotional, stigma-based, psychological) suffering is NOT ethical.
Don’t forget: there ARE surgeries performed on infants with DSD variations that are medically necessary – these ethical concerns don’t apply to those
Parental stress is not a medical emergency, and parental stress does not define medical necessity (as per 2016 consensus paper, a landmark paper in intersex policy).
Four ethical reasons that infant and child DSD surgeries are a no-no:
o High potential for harm from invasive surgeries, especially on fertility and sexual pleasure
o Surgeries of this nature are not routine procedures, like a vaccine; rather, they are closer to a procedure affecting fundamental rights like sterilization. So, there is an inconsistent absence of legal oversight
o There is almost no outcome data that supports the justification of psychosocial alleviation for these surgeries
o Ongoing justification for surgery: ease parental distress and promote bonding with children. Two issues: 1) not an agreed-upon conclusion, and 2) still isn’t an ethically sound reason to subject an infant or child to a highly invasive surgery
o The big concern is: was this surgery justified by psychosocial reasons?
Surgeries: making medical care more complicated
After surgery, many folks need follow-up medical are
Having your gonads removed during surgery means you will have to hormones that would have otherwise been made in your gonads
Some folks may need follow-up procedures on the body parts that were part of the original surgery
Why does this suck?
First off, we’re talking about American health care, so needing life-long insurance (to see doctors for the consequences a surgery performed before you even knew what the term “insurance” meant) makes things hard.
Folks age out of pediatric practices, or move, or folks retire – so continuity of care is also quite challenging
Dr. Gregorio pointed out that there are only a handful of academic centers that can manage folks with surgical complications at the standard of care that they warrant.
Huzzah! Progress!
Two large academic urban medical centers said: no more surgeries.
Lurie Children's Hospital (affiliated with Northwestern University’s medical center)
Boston Children’s Hospital (affiliated with Harvard University’s medical center)
TRANSCRIPT
Sean Saifa Wall: I think it's already enough to be human, but I feel like intersex people shouldn't live with shame and stigma about how they're born.
[QHP THEME MUSIC]
Sam: Welcome to QHP. QHP is a podcast about queer health topics for sexual and gender minorities. My name is Sam. I use he him pronouns, and I’m in primary care internal medicine training in new york .
Gaby: I'm Gaby. My pronouns are she/her. And as always, I have the same job title as Sam.
Richard: And I'm Richard Greene, a primary care doctor and the medical director at the PRIDE health center at Bellevue Hospital in New York City. And my pronouns are he and him.
Sam: Today's episode is a deep dive into the issue of surgeries performed on non-consenting infants and children who have medical variations that fall under the intersex umbrella.
Gaby: At the top of this episode, you met Sean Saifa Wall - an intersex advocate and co-founder of the Intersex Justice Project. We'll hear from Sean again soon as he talks to us about a surgery that he underwent as a young child - and how that very surgery has been the catalyst for his advocacy work and passion.
Richard: This episode involves the discussion of surgeries that are often considered traumatic or acts of violence by their patients. This may be difficult for some folks to listen to.
Sam: Our episode's going to focus on the ethical reasoning against the surgeries and the medical literature that does, or really doesn't support them. But this will be a challenging topic for some. So we wanted to provide a co.Tent warning upfront.
Gaby: One more caveat. Sean, who is our community voice, has chosen to share his story publicly. But the detail of someone's surgical and medical history are theirs alone to share
Sam: Amen.
Gaby: And then one last thing to be clear when we talk about surgeries that violate bodily autonomy, we're talking about surgeries that are not medically necessary, meaning that they're not life or limb saving.
Richard: It’s also possible and even likely that some people who were born with differences of sex development had sugery to assign a sex at birth and feel perfectly fine as adults. But what we’re addressing here are the ethical issues, that when abandoned, can lead to serious distress and medical complications for adults.
Gaby: All right, preamble done. Let's get back to Sean and let him do the talking.
Sean Saifa Wall: My name is Sean Saifa Wall. my pronouns are he him and his. And I, how did I get started doing intersex advocacy? I think I got started because I h ad a fundamental belief that what happened to me, what happened to my body and what happened to my comrades and people who I care about who are also intersex is wrong.
Sam: Sean rewinds to the very beginning of his story.
Gaby: Or actually, his grandmother's story.
Sean Saifa Wall: I can't tell my own story without grounding my story in the South. in Wilmington, in the 19. Early 1950s. When my grandmother gave birth to, three intersex children. it's definitely shaped my intersex identity because my grandmother , was, you know, a single woman who raised nine children, three of whom were intersex during Jim Crow. So I can't talk about being intersex without talking about being black, without talking about being queer.
Gaby: Like many who identify as intersex, Sean remembers very clearly the day that he was told about his variation.
Sean Saifa Wall: I remember my mom told me when I was like seven or eight years old. She was like, you have testicular feminization syndrome. I didn't know what the hell that was. I was like, “I don't know what this is, lady"”
Richard: The diagnosis Sean mentions is now known as androgen insensitivity syndrome, or AIS.
Gaby: People with AIS don't respond to the testosterone in their body. They're insensitive to it. This means that the development of the genitals, which in part depends on testosterone signaling while in the uterus and as an infant doesn't occur as it does in those without AIS, which means that individuals with AIS may have undescended testicles.
Sean Saifa Wall: As opposed to the doctors being really honest with my mom and saying that, well, your daughter has testes that are undescended and we can watch them to make sure that. You know, to see how they progress to see if they do become cancerous. They told her that my testes were gonads and that, and go natural cancerous and that they had to be removed immediately. And given, you know, my mom's a parent, you know, she was very concerned and she consented to. Surgery and that surgery would shape my life essentially.
Gaby: Sean's story is very much his own, but it does have some common threads with the stories of many other intersex advocates.
Sam: 100% agreed. For starters, Sean's diagnosed with a difference in sex development that is understudied; there's an anxious parent involved; and doctors are framing the surgery as a “fix” for what's perceived as an issue. The surgery ends up being a trauma that defines how the person engage with medical care going forward.
Richard: it's hard to know what the doctors who were advocating for Sean’s surgery actually knew about AIS. In 2016, a landmark paper was published saying that there is “poor evidence” and quote that gonandectomies, or the removing of the gonad surgically before puberty, is actually medically warranted.
Gaby: And FYI: “poor evidence” is a doctor's way of saying “we don't have the scientific knowledge to support this practice”. So what we're trying to say is that medically Sean's surgery wasn't urgent. It wasn't life-threatening in that moment. And rather than wait and see how Sean's body, gender, and sense of self developed the surgery to remove Sean's gonads was done without his consent.
Sam: Before we dive into the ethical plot points. We want to make sure that we had a technical understanding of the surgeries that are offered to parents of intersex, infants, and children.To do this. We spoke to IW Gregorio.
Dr. Gregorio: I'm IW or Ilene Wong Gregorio. and I am an adult urologist. I'm currently in private practice. I'm in Southeastern Pennsylvania
Sam: We should say she is an adult urologist, meaning she does not nor has ever done these surgeries but dr. didn't get to say is that she's worked closely with interact. She's spoken at this topic on multiple conferences and is even authored a fiction novel with a lead intersects character.
Richard: Dr. Gregorio walks us through one of the common intersex traits for which surgery has historically been done in some infants, something called hypospadias.
Gaby: As a note hypospadias is a different variation than the one we mentioned earlier, which is AIS, but we bring it up here because it actually touches upon lots of the ethical issues related to surgeries performed on young intersex individuals.
Dr. Gregorio: Hypospadias – it's an intersex trait. not all people with hypospadias consider themselves intersex, it's a condition in which the. Meetups are the tip of the penis. Isn't at the very tip, but it's somewhere alongside the bottom side of the shaft. I'll potentially, even as far down as at, at the, screw it over, even behind the scrotum, what's called a perinatal hypospadias
Gaby: Hypospadias is when the urethral meatus the tube where urine and semen exit the penis opens on the bottom of the penis.
Dr. Gregorio: Traditionally, we're taught to in discussions to tell parents that sometimes, the hypospadias can cause, Dribbling. really severe forms of it can make it so that, obviously sperm doesn't come out of the end of the penis and so it can affect fertility in, Terms of quote, normal, penetrative sex.
and sometimes it's even couched in the terms that, Oh, well, he can't pee standing up, so that must be a problem. So some people actually use as an argument for why hypospadias surgery should happen.
Gaby: The thing about these surgeries, is that just like with Sean's gonadectomy, they're not medically urgent. Life and limb are not being threatened here. What is being threatened is the binary concept of what a person with a penis should and shouldn't be able to do so here, we're talking about things like having penetrative sex peeing while standing up.
Richard: This was the historical paradigm that supported doing these surgeries, that bodies that existed outside the binary understanding of genitalia were incompatible with, well, our understanding of people's bodies.
Sam: This is at the heart of the controversy around intersect surgeries. The idea that these bodies with variations are pathologic, that they need to be fixed in order to conform with cultural notions of what it means to be male or female, and how these cultural definitions are fundamentally tied to how we expect people to have heterosexual penetrative sex.
Gaby: It is worth noting that the messaging around these surgeries has kind of recently changed. Previously. A cosmetic reason was compelling enough to warrant surgery or justify it. Nowadays most urologists will claim that surgeries like the ones perform for individuals with hypospadias are not done for solely cosmetic reasons. Instead, people cite the things we just mentioned, like being able to urine and standing up as the primary reasoning for offering these surgeries. Long story short it's different packaging, but the same surgeries are still being done and justified.
Richard: To be clear by most urologists. You really mean leading academic urologists, that large medical centers in urban areas, or folks who have stayed involved with these conversations since they completed their training.
Gaby: Right. So the whole paradigm shift we just mentioned is by no means universally adopted plus paradigm shift or not, there's still a lot of stigma floating around. We spoke to professor Julie Greenberg about this, since she's an expert on this exact subject.
Professor Greenberg: I am a retired law professor. I have been writing teaching and speaking on issues, affecting the intersex community for. More than 20 years. So I come to the issue as an academic, but also I have been involved with, interact since its inception. I've been on the board of directors of interact since it started. And I'm currently the president of the board of interact. the book that I authored called intersexuality on the law, focuses on. Exactly that. What are the legal issues that affect the intersex community?
Sam: Before Dr. Greenberg lays out the current ethical landscape. She spoke about the very important historical context that got us to today's ethical conundrums.
Professor Greenberg: The ethical issues starting in the 1950s all the way through the 1990s were horrifying. You know, first the whole surgical technique was based on a lie by John money. Who said, whatever, search, whatever genitalia you surgically sculpt. That will be the child's eventual gender identity. So first we had, 30, 40 years of these surgeries being performed based on a total lie. But then second, you know, there were so many other ethical issues where doctors lie to parents. Doctors told parents to lie to the children.
Luckily we've got rid of those, but you know, it was not that long ago that that was the norm.
and, and now the argument. by, by. The people who still support surgery is well, you know, we're fully informing and, and think techniques are so much better than they used to be. , the techniques may be better, but we don't have the outcome data to prove that they're going to be better.
Sam: Dr. Greenberg was very clear with me that the troubling past should be separated from the troubling present, but I'll say it again, in both cases, the same cultural biases and assumptions are present. Although the exact reasoning and the way it's packaged and delivered has changed.
Gaby: And while these days doctors and surgeons no longer think it's okay to have parents lie to their children about medical conditions. They still advocate for the surgeries.
Professor Greenberg: The people who believe that they should be performed, say. I'm acting out of the best interest of the child. And I agree that, you know, they, their motivation is the best interest of the child and they firmly believe that a child growing up with atypical genitalia will suffer psychosocial harm. Even though we don't have studies that firmly show that.
And number two, they firmly believe that these surgeries have improved dramatically. . So they say, well, we've got a child who may grow up traumatized. I can surgically altered them. The surgical alteration will get rid of the potential trauma. Of course we should do the surgeries.
Gaby: So some doctors seem to think that surgery will alleviate the trauma that comes with having variations in genitalia. But let's cut back to Sean who says just the opposite that surgery done to his body caused harm rather than alleviated it.
Sean Saifa Wall: And I think if, you know, if I could talk to my younger self, I would actually tell my younger self that what I know now as an adult is that what, how I was born is normal and what happens to me like, was it medical experimentation? And that was not normal. And I think for me as a young person, I really internalized. This sort of secrecy, that doctors kind of, that surround these intersex variations and I think it was also like this really deep fear about being unlovable because of how I was born.
Sam: So with that history under our belts, professor Greenberg then walked us through the main ways that the surgeries under discussion and intersex advocacy remain an ethical issue today. here's point number one
Professor Greeberg: there's a number of reasons that ethics are so important to intersex advocacy first. The potential for harm from the surgeries that are being performed on intersex infants, are really significant. The risks include the fact that they may be altering the genitalia. To a form that doesn't end up matching the child's eventual gender identity, the surgeries could affect. Reproductive capacity. There's a lot of negative physical consequences related to, ability to have sexual pleasure and the need for repeat surgeries. We're talking about an area where the potential for harm is so great that we really need to consider. Is it ethical to be performing the surgeries and if it is ethical to be performing surgeries under what circumstances,
Gaby: All right. So that's ethical point. Number one, the surgeries may have adverse effects on fertility or sexual pleasure.
Professor Greenberg: A second reason that ethics are so is so important in this area is it's being performed on an infant. Who's obviously incapable of giving informed consent.
Gaby: Remember - informed consent means being able to comprehend the risks and benefits of a procedure and make an informed decision about what's right for you.
Professor Greenberg: So the question is, is this type of surgery being performed on an intersex infant? What we think of as a routine procedure, like agreeing to a measles shot. Or is it a procedure affecting a fundamental, right, like a sterilization I would argue that we've had a number of international governments and international human rights organizations that have all studied the issue extensively and have all come to the conclusion that it is a human rights violation. To perform these surgeries that are not medically necessary, without the patient's consent.
Sam: When professor Greenberg says a number of international groups and organizations have spoken out against these types of surgeries, it's a pretty long list. Some of the highlights are the world health organization. The HCLU Lambda legal, a UN expert group made up of lawyers and physicians, another European medical consensus group. Of the European commission bioethics committee and then a few North American society as well. Like the American Academy of family physicians, physicians for human rights, three former us surgeon General's and also the pediatric endocrine society and the North American society for pediatric and adolescent gynecology.
Gaby: All right. So those are some heavy hitters.
Richard: It's always tricky when a parent has to agree to something because with few exceptions in the United States, parents must provide agreement to almost all medical interventions, HIV testing, sexually transmitted infection, testing, and birth control this side for anyone who is under the age of 18.
Gaby: All right. So that's another reason surgical intervention deserves increased ethical scrutiny.
The person signing off on some of these operative decisions. Isn't the person getting the operation, .
Professor Greenberg: The third reason ethics are so important is that outcome data for these treatments is really. Sparse. And so we really don't know what the outcome will be, despite the fact that we've got all the potential for significant harm.
Richard: This specific body of medical literature is outdated, inflicted under understudied, and doesn't lend itself to summary easily, especially to a stressed parent. Who's likely not a healthcare professional to that, that the outcomes are measured in decades after proceed here when he infants or adults, and then have already been impacted by many medical traumas and that our culture is evolving into two of gender.
Sam: To be clear it isn't the lack of data professor greenberg was clear about this
Professor Greenberg: the issue is not that there's not robust data to support the procedure. The issue is whether the patient's undergoing the procedure. Knows that there's not robust data.
Richard: The risk benefit analysis becomes a very unclear when the benefit isn't data-driven and the risks are not well-documented
Gaby: And there's really nothing, anywhere in the data to support the notion that intersex variations, cost, distress, or harm to those born with them.
Richard: I think there are a lot of proud advocates within the intersex community who would tell you just the opposite. Maybe there's enhanced sexual pleasure.
As long as we allow for variation, we might discover that all bodies have their own benefits.
Gaby: So to summarize this ethical point, much of the rationale for these surgeries hinges upon medical literature that well maybe too flimsy to hold up to scrutiny. And then lastly, but certainly not least for me, there's this question of who is this surgery really benefiting?
Professor Greenberg: And finally is when you look at the justifications for why these surgeries are performed, one of the justifications, and I just read a couple of recent articles that just came out. So this is still a current justification. Is that the surgeries ease parental distress and promote bonding with the child. And you really have to for me stop and think about that. How often do we perform surgery on anybody in order to ease the distress of another person? And so is that ethically sound to subject a child to a highly invasive surgery with a high. Degree of risk in order to ease parental distress
Sam: hot. Take new.
Gaby: I really want to emphasize professor Greenberg's last point about surgery as a psychosocial intervention, which he's really getting at here is that a surgery done to an infant's body is actually for the quote unquote psychosocial benefit of the parents.
Richard: And it's almost unheard of anywhere else in medicine that if something as invasive as potentially genital altering surgery could affect fertility, how someone has sex. If someone goes to the bathroom is done potentially without even their knowledge of it happening all for the sake of. Potential parental or child distress, is an odd default choice to make
Sam: Parental stress is not a medical emergency and parental stress does not define medical necessity. This is per the consensus paper from 2016. And that paper actually advocates for a lot of non-surgical ways to address parental stress like social workers, psychiatrists, counselors, other mental health providers. And just to be clear, they don't recommend surgery. If a parent or parents are stressed.
Gaby: I feel like it probably goes without saying that an interdisciplinary team, meaning like a social worker and take a social support is almost always an excellent thing in medicine.
But I think the point is well taken here that having a surgery done to you without consent, and then having the whole thing disclosed to you can put a ton of strain if not break the parent child bond.
Richard: And the irony is that's exactly the opposite of the rationale being used. One of the big reasons people use parental stress to justify surgeries on intersex, children and infants is fear that parents won't be able to bond with their children.
Gaby: You mean won't be able to bond with their children because they exist beyond the gender binary.
Richard: Yes. And doesn't it sound kind of crazy when you put it that way.
Sean Saifa Wall: I know it's a very scary moment when parents give birth to a child and they want their child to be happy, healthy, and whole. And I think, you know, if I can say to any expecting parent or any parent who is lucky enough, To give birth to an intersex child is that I just want to enforce that their child is normal. Their child is different and should, you know, be loved . And I think parents should also be open to the fact that gender changes, you know, gender changes. And I think what intersects. People and intersex variations shows us is that sex is like beautiful and you know, sex is not fixed sexist fluid.
Richard: One more point that I might mention it. There are some surgeons who will argue that by doing surgery on infants or children, they are doing surgeries that will be done more easily and adjusted to more easily than they will as adults. But again, it relies on the assumption that variations in bodies cannot lead to normal, healthy adult function.
Gaby: And I mean, truly, do we even have the evidence for that, right?
Richard: And so why is surgery the default as opposed to reserved for extreme cases where there's threat to life or limb?
Gaby: For the record, professor Greenberg was on the same page.
Professor Greenberg: There are some surgeries performed on intersects infants that are medically necessary. They will save the child's life. And obviously those surgeries are not what not subject to ethical concerns. if any surgery is medically necessary. The ethical concern doesn't arise.
Gaby: All right, thanks to professor Greenberg. I think we've safely established that these surgeries are unethical, like with a capital U let's recap, the ethical points and move on
Sam: First informed consent is possible but complicated by the messy data landscape in the varied variations among intersex individuals
Richard: Two, any ethical scenario where parents are giving consent for an intervention that could potentially cause sterility or impact reproductive capacity is often legally scrutinized and may have an extra barrier, but not. So for these particular interventions,
Gaby: There is really just no outcome data on these surgeries.
And so do we even really know that there is any benefit that justifies the risks?
Sam: And for, the big one and the target of multiple intersects advocacy groups and their legislative and policy efforts, non-medically necessary surgeries, violate bodily, autonomy, and alleviating parental distress is not supported by data and not ethically justifiable
Gaby: It's not just grossly unethical. It's also medically unprecedented. Then I think the bottom line is that stigma in and of itself, shouldn't be the reason that we proceed with any medical therapy. We should be fighting the stigma and the cultural norms that propel that stigma in addition to questioning how, and when that stigma has been built into our cultural and our medical decision-making.
[TRANSITION MUSIC]
Gaby: So we've just spent a lot of time talking about the biological consequences of these surgeries, but the fall out of these surgeries is so much bigger than just biology, pure Sean.
Sean Saifa Wall: Another reason why I would advocate against genital surgery and gonadal surgery is that it makes an assumption that intersex people will get care. We'll get follow up care. And I know in my life personally, there have been moments, many moments when I haven't had health insurance, because in the United States health insurance feels like a luxury and it's only through the Affordable Care Act that I've been able to have consistent health care. If, you know, if there is any sort of follow up you're on your own, essentially. and I think that's what makes it so cruel.
Gaby: Sean's experience has been that this traumatic invasive surgery was done. And then, well, no one really acknowledged at least from a clinical medical perspective that the surgery isn't the end all be all of medical care for intersex people.
Richard: The best practices have been said to be multidisciplinary, but it's pediatric urologists often who do the surgery. And it's not Sean's experience that the same surgeon followed him up or that he could even continue to see the same doctor because his insurance changed or he didn't have insurance for awhile.
Gaby: So what you're basically saying is that you can have a surgeon do the original surgery, but then you as a patient might outgrow that surgeons practice and expertise.
Richard: And then you're asking someone who did not do the surgery to follow up the surgical result, which can be difficult if people are not well trained in this.
Sam: And that's the confusing clinical landscape that we actually brought to dr. Gregorio as an adult urologist, to get a sense of , what is her experience as someone who doesn't do these surgeries, dealing with the reality of the surgical care followup.
Dr. Gregorio: it continues to be one of the most devastating parts of being, a urologist is seeing the longterm, you know, harm, and sort of lifelong chronicity of these prior surgeries. And often what happens is, is that a general urologist, like me is often not equipped to deal with it, which means that anyone who has a complications from these types of surgeries, will inevitably need to go into a large academic center with, a fellowship trained reconstructive urologist that is able to approach, dealing with many of these complications because often these re these reconstructive surgeries do require , very aggressive reconstruction and treatments that, that, that your garden variety, general urologists will not have had experienced doing.
Sam: The medical practices, where many of these surgeries take place. Aren't set up to follow these patients through their adult lives, where the surgery continues to impact them. And even in the best case scenario specific to follow up, those resources are rare and geographically limited.
Gaby: And even if folks do have the luxury of having insurance and living close to one of these fancy academic centers that Dr. Gregorio described often, intersex individuals have intense trauma associated with medical intervention, which makes us even more fraught
Richard: Right. And just to bring it back, these issues of access and the followup landscape, all of these add fodder to the argument that these surgeries are unethical.
Gaby: As if we needed more to critique these followup appointments can also be times when the medical system imposes damaging and traumatic assumptions of gender onto individuals with intersex variations.
Richard: Exactly.
Gaby: like What happened to Sean when he was prescribed hormone therapy after his gonad removal?
Sean Saifa Wall: After surgery, I was put on feminizing hormones like estrogen and progesterone. And I remember feeling kind of really dysphoric, you know, I definitely felt like a body dysphoria because you know, I was very – I was very content with how my body was developing before I was castrated. but once I was castrated, like my body started to develop in a super feminine way. And I think that contributed to a lot of body dysphoria and it was very traumatizing for me
Gaby: Here's a subtle medical point. Sean didn't need to be put on estrogen. .
Richard: When you go to, to remove your body, depends on hormones, given through pill or injection in order to have a healthy well-functioning body, but it doesn't matter much whether these hormones are masculinizing or feminizing, as long as enough hormone is present to protect your bones
Gaby: And even when Sean eventually got to a hormone regimen that worked for him, he still had to work to be his own advocate with patient health scenarios. We've talked about this a lot in our first episode on the intersex community, but it really can't be discussed enough..
Sean Saifa Wall: I think when I first started taking testosterone, I don't think. Providers knew what to do. but I think for me, I think I've been very fortunate since starting my testosterone journey, that I've encountered providers who are willing to listen to me and willing to sort of, sort of follow my lead.
Sam: Providers who listen is great, but Sean should be working with his physician, not working for them. And this also speaks to the need for physicians and healthcare providers to be humble and acknowledge what is known and not known.
Gaby: Something that physicians are famously terrible at.
Richard: Absolutely. And it's absolutely okay for physicians not to know everything and it's okay for us to learn from our patients, but we need to be open to learning more about our gaps from the literature and other providers and community members, so that we can provide our patients with the best care for them as individuals and not rely on them to bring us the information.
Gaby: Seeing our patients as individuals letting their goals and desires take the lead. Where have I heard that before? Oh right. Literally any time we talk about queer health
Sean Saifa Wall: , I think in this moment that I feel so protective and so allied with the trans community, because I feel that what intersex people are fighting for intersex activists are fighting for as bodily, autonomy, and sovereignty. . And It's interesting because trans people are also. fighting for bodily autonomy, you know, trans people are fighting for the right to do with their bodies, what they want, you know? and I think trans people should be supported in that, you know, and like what I always said and believe is this, like, you know, trans people have to fight for surgeries that they do want. And intersex people get surgeries that we don't want.
Gaby: now for a little bit of a real-world news update, intersex advocates, who've been criticizing surgeries. They don't want have been making progress.
Sam: While we were producing this episode, some of Sean's advocacy came to fruition. The intersex justice project, and interact celebrated the announcement from Lurie Hospital in Chicago associated with Northwestern university. That was a historic moment in intersex advocacy.
Richard: Absolutely. Lurie issued a formal apology - the first from any medical center in the United States for performing surgeries. With some footnotes, it said it would no longer allow these surgeries.
Gaby: This is a huge deal, but this apology isn't any sort of legal claim and there's a lot more work to be done.
Richard: but it's a big step towards changing the culture of how we approach surgical interventions. And as Sean points out, it challenges the very power dynamics that medicine has historically relied on.
Sean Saifa Wall: As a society, we place a lot of faith in medical providers. I think what intersex activists doing. I think what makes our movement really powerful is that we're demanding accountability from an institution that has been above reproach.
Gaby: Before Sean has the last word we want to go back and reiterate one last time, the ethical problems that come with surgeries done to non-consenting intersex bodies.
Sam: mainly that there is no ethical precedent to support doing surgeries to non-consenting minors, for the psychosocial, meaning emotional treatment of stress for the parents. It's a byproduct of cultural assumptions.
Richard: That stress may be real, but surgery is not the solution. That's the conclusion of intersex, activists, ethicists, and a slew of international bodies, advocacy organizations, which we will link to in our show notes.
Gaby: We also spend some time talking about the long-term harms of surgery, but there are real healthcare consequences to these invasive procedures and that folks who get them often lack robust follow-up and often require additional medical care on top of the original surgery
Sam: Here's Sean with the last word.
Sean Saifa Wall: if I can say anything else, I just want people to know that you're not alone. Like, I think what creates an environment for these surgeries to happen is the feeling of being alone. And although it may feel scary and overwhelming, like, you know, you're not alone.
[QHP THEME MUSIC]
Gaby: QHP is a power sharing project that puts community stories in conversation with health expertise to expand autonomy for sexual and gender minorities.
Sam: we would like to thank our guest Sean Saifa Wall, Dr. IW Gregorio and Professor Julie Greeberg. We would also like to give a big shout out to interact and Hans Lindell who served as this episode's community reviewer.
Gaby: If you like what you heard considered joining us online, we have a website www.queerhealthpod.com. And we have show notes, a bunch of other great resources and more. You can also reach out to us on Twitter or Instagram, where our handles are @QueerHealthPod. You can let us know what queer health questions do you want us to bring to the experts on your behalf? Or you can just check out our graphics.
Sam: And thank you to Lonnie Ginsburg for composing our theme music.
Richard: Opinions in this podcast are own and do not necessarily represent the opinions of any of our affiliated institutions. And even though we're doctors, please don't use this podcast as medical advice, but instead, please consult with your own healthcare provider.