S1 E6: Woman and Medicine part 2: Elinor Cleghorn, Unwell Women



[00:00:00] Section: Podcast introduction

[00:00:00] Overdub: Hello, welcome to The Story of Woman, the podcast exploring what a man-made world looks like when we see it through her eyes. Woman's perspective is missing from our understanding of the world. This podcast is on a mission to change that. I’m your host, Anna Stoecklein Lau and each episode I'll be speaking with an author about the implications of her absence - how we got here, what still needs to be changed, and how telling her story will improve everyone's next chapter.

[00:00:34] Section: Episode level introduction

[00:00:35] Anna: Hello friends. Welcome back to part two of the story of woman and medicine. If you haven't listened to part one yet. You may want to go back and listen to that now. In part two of this conversation about Elinor Cleghorn's book Unwell Women, Elinor and I get into pregnancy, male birth control or lack thereof, the rebranding of hysteria and how we see it play out in the 19th and 20th centuries. This episode also includes what men stand to gain in changing this status quo. And how women are not just victims and unwell women, but how they have fought for women's rights in health and in life throughout all of medicine's long and troubling history. And why telling your story is so important and how we can join together as a collective force to continue building on what those who came before us have achieved.

Even with two episodes, there is so much, we didn't have time to get into like lobotomie! Oh my God. Throughout the 1940s and 1950s, so not that long ago, an estimated 40 to 50,000 lobotomies took place in the U S and around 17,000 in the UK, the vast majority of which were done on women, hysterical women that is. The most common reasons for removing a part of a woman's brain were emotional tension, depression, obsessive compulsion's, anxiety, hypochondria, and psychosis. So basically women who expressed mental or emotional pain that couldn't be explained by doctors.

And what does it look like when you remove a part of a person's brain you ask? Well, according to some of the leading surgeons of this procedure, the same ones that lobotomized JFK's sister, if the patient's survived, it was a success if she reverted to an almost childlike state. As Elinor puts it, the object wasn't to take away a patient's pain, but to literally sever her emotional connection to it.

Nor did we have time to get into the mass nonconsensual hysterectomies that have been performed on mainly poor women and women of color. This has taken from Elinor's book: legal in the U S since 1907, young women under 18 confined to institutions for conditions like epilepsy or mental illness, those most often subjected to sterilisation, often done without their consent. And in the 1930s, the Supreme court set a precedent for the legal sterilization of young, impoverished women, ruling in one case that quote "three generations of imbeciles were enough." And according to Elinor's book, a law passed by the Nazi party in 1933, which led to the party sterilizing up to 1000 women a day, was heavily inspired by the 1922 compulsory sterilization law in the U S.

So after the depression, eugenic lawmakers in the U S framed sterilization as a solution for the country's economic burdens and all of this led to mass sterilization of Black and other ethnically diverse women. Mississippi allowed surgeons and gynecologists to perform hysterectomies without patient's consent. It was so rampant that the operation became known as the "Mississippi appendectomy". Maybe you've heard of Fannie Lou Hamer, the civil rights activist who went to get a small tumor removed and had her uterus removed without her consent or knowledge. It wasn't until weeks later that she found out what had happened. And this was 1961.

And I do hate to be the bearer of horrific news, but this history of medicines abuse of marginalized women in the name of research and control continues today because in 2020, it came out that an ICE facility in Georgia was performing unwarranted and often nonconsensual mass hysterectomies on detained women. It was compared to an experimental concentration camp. So full circle from the 1922 law that inspired Hitler to take after the U S medical institutions.

Yep, these things are pretty depressing to think about, but how else are we going to understand what we're up against and start turning things around?

So there is just so much important information in Elinor's book that we barely even scratched the surface and she writes so well that she makes you not want to put the book down, even with this kind of depressing information in it. Because she also highlights what these same women have been doing all along to push back. And that is an incredible story that needs to be told.

All the quotes that you'll hear read during the second part of the interview are taken directly from Elinor's book, Unwell Women.

And lastly, I just want to throw out two recommendations for continued learning in this area. The first one is the documentary Unrest on Netflix, which painfully demonstrates how the medical legacy of hysteria is far from over still today.

And a podcast called NATAL, which elevates the voices of Black families, medical professionals, and advocates about the experiences of pregnancy for Black people in America, a very long overdue narrative. All right. That's enough of me now for part two of my conversation with Elinor Cleghorn about the story of woman and medicine.

Enjoy.

[00:06:41] Section: Episode interview

[00:06:41] Anna: So we have gone through Ancient Greece, the Middle Ages, and then we move to the late 18 hundreds when women start demanding, as you say, equal education and suffrage. So seeing these objectively have nothing to do with medicine, I didn't quite expect them to pop up in this way in your book. So, can you tell us what the medical community had to say about women's participation in these areas?

[00:07:11] Elinor: Of course. From the mid, towards the late 19th century, so in the 18 hundreds, there was a movement that arose that tends to be called "The Woman Question" in inverted commas with capital letters. And it was about women coming forward, gathering in groups, or as individuals to demand that women should have the right to an equal education on the same times as men, that they should not be barred from any professions on the basis of their gender, that women should have the right to pursue independent lives, that women should have the right to choose to have an equal marriage. And there were many different strands that the women question, but when it was really on the table, when these debates were really arising and this, as you say, as well, was in the run-up to the campaigns for women's suffrage, a lot of medical authorities began to really double down on the idea that women were physiologically and biologically incapable of having any form of public or professional responsibilities. And rather than just saying, you know, no, I want to live in a patriarchal society, men are great, you know, women stay in the kitchen, they spun these arguments, according to what was apparently best for women. Now, around this time, there was a medical idea that bodies only had a certain limited amount of energy and that this energy had to be expended in the correct way. And of course, because women menstruated and because younger women were perceived to be building this reproductive systems so they could have anything to do in their lives, many medical doctors decided that it was ridiculous to seem women could have an equal education because they just didn't have enough energy.

They were expending all that energy menstruating. So how they think properly. And if they did choose to think or write or read or participate in debates or go to gym class, they will be using up their energy in the wrong direction. And they would leave school with horror of horrors: an underdeveloped reproductive system, paltry menstrual periods, and be beset with diseases of the reproductive organs and be completely unmanageable and just be spinsters. So it was it's again, absurd and infuriating, but it's so fascinating as an example of this thing I talk about with medicine being every bit as social and cultural, as it is scientific. These medical chaps in the UK and the US who were leading these sort of debates against expanding women's rights, with very much voices of authority, you know, they were speaking about women's lives, but they were drawing on this apparently irrefutable biological evidence that women were simply incapable. That it would not just be undesirable for women to have more rights, but it would be very unjust of them to recommend it because it would make them sick and ill. And luckily around this time of the 19th century, around the time of The Women Question, around the time of the emergence of suffrage campaigns, there are women who are gaining a voice in public spaces who are writing against this kind of propaganda, which is what it was.

And it's also a time in which women were gradually beginning to be able to train as professional doctors. And menstruation or menstrual health was one of the really important battlegrounds at which some of the earliest and most important figures in women's medicine began to articulate you know how important it was, not just have women in medicine, but how important it was to expand women's rights. And one of my favorite figures in the book as an American physician called Mary Putnam Jacobi, who really took, you know, the menstrual bull by the horns here, menstrual debility bull by the horns. And she argued against a Harvard doctor who was really, leading these campaigns to say women would get so menstrually ill if they went to school, that they should be practically barred from getting an education. And she debunked this by doing research with actual women.

[00:11:25] Anna: Woah

[00:11:25] Elinor: by giving women diaries to record that menstrual symptoms, by recording experimental data about their body temperature and the nourishment and nutrition and exercise levels. And she produced a volume of researched material that proved that unless a women had an underlying disease, there was nothing in the nature of menstruation to suggest that rest was needed. That exemption from activity was needed. And she really emphasized and was one of the first people to do so, that periods happen to the body, not to the mind, a very important distinction.

So she really, you know, and she led this new form of thinking, a new form of much more feminist medical thinking, which combined agitation for women's rights, with clear, scientific knowledge that was myth-busting and debunking. And, that's fantastic. It's such a rich, fascinating period in medicine's history.

[00:12:27] Anna: Yeah, and we really needed people like her because as you say, many physicians said that women's suffrage was a destructive illness. And this is an actual prescription that was given to women back then as remedies for their, you know, nervous exhaustion and other hysteric symptoms, quote, "Live as domestic, as life as possible. Have your child with you all the time, lie down an hour after each meal, have but two hours of intellectual life a day, and never touch pen, brush or pencil. As long as you live."

This was in the 1900s. I mean, that will make anyone lose their mind. So I like how you highlighted the response from women that they're not just victims and unwell women, but they're taking a stand and we see, as you say, medical feminism come out of this, women pushing back, getting into education so that they can become the doctors that find the cure and trailblaze to start forming the path of what we see in medicine today.

[00:13:32] Book excerpt: “For centuries our bodies have been demonized and demeaned until we feared them, felt shame because of them, were humiliated by them. Medicine has historically pathologized what it means to be a woman, and what it is to live in a female body, to such a degree that being unwell has been normalized in society and culture, while a woman’s rights over her own body remain contested even today. But, over the centuries of medicine’s long history, women – as doctors, researchers, activists, rebels, campaigners and, most of all, as patients – have continuously challenged the medical orthodoxy that has insidiously controlled their lives. Medicine’s history has always been, and is still being, rewritten by women’s resistance, strength, intelligence, and incredible courage.”

[00:14:20] Anna: So I want to talk about, pregnancy real quick, because you know, we've talked about auto immune diseases and menstruation, menopause. Pregnancy, and childbirth is obviously another big component here and, first of all, I find it wild that bearing children has been praised as the sacred duty for ever. And yet we seem to have made very little progress in the actual medical care of pregnant people. According to the World Health Organization, today 810 women die every day from preventable causes related to pregnancy and childbirth.

And the U S is particularly dire, you know, this is no secret. It has the highest maternal mortality rate in the developed world. And black women in America are at least three times more likely to die than white women. And almost two thirds of all of these are preventable. So, this is going to kind of play into everything you've been saying so far, but can you help us understand how it's possible that medicine has made such little progress in protecting the lives of pregnant people when this has been held up as such a sacred duty. And then, also to the point of how we see the discrimination and bias play out when you factor in other marginalized groups, black women, women of color, indigenous women...

[00:15:42] Elinor: Yeah of course. So throughout history, giving birth to a child has really been the most hazardous and p erilous thing a woman could do or a person could do with that body. Rates of maternal and infant mortality throughout history were frighteningly high until really the discovery of germ theory in the 19th century. So absolutely it's infuriating and contradictory that pregnancy is not just held up as a sacred duty, but it is the most healthful thing that a woman can do with her body when actually it's potentially the most dangerous....

[00:16:17] Anna: yeah.

[00:16:18] Elinor: ...that she can do with her body. And these sorts of messaging always clash. And we see this particularly in the pro natalist culture, around the two wars in the UK, in the U S particularly, when, you know, the idea of women performing a patriotic, national duty, to give birth to citizens of the future, was really promoted.

But yet just before both of the w ars, in the U S and the UK, maternal and infant mortality rates would dire. So on the one hand sort of pushed this public agenda that women needed to have more babies, it was patriotic, it's a national duty, but on the other hand to not improve care or services or the treatment of women, to ensure that pregnancy was safe for them or that indeed they were properly supported and cared for after they had had babies. And the UK around the 1930s, women who were involved in supporting, especially working class women in the UK, became very concerned about the state of maternal health and not just maternal health, but the impact that having babies or going through, you know, terrible experiences, miscarriages, still births, birth injuries, was having a woman and they began to really bring this to attention by researching the maternal experiences of women in Britain and arguing for a much more caring, maternal culture, where women would be provided with free health care, where their babies would be given, you know, the provision of milk and food in the years afterwards, where there were maternal health centers or women were cared for. We see this persist today, the shifts in the culture around birth from something that's a woman only, very feminine, very feminized space that you have in say the Middle Ages to the introduction of male midwives in the 1700 s, with the interventions of things like forceps of very managed births.

Now these sort of struggles between what is best and healthiest and safest for women have really gone on in these cycles. You know, throughout the fifties, birth was very managed. And I write in the book about Twilight sleep, which was this horrendous form of anesthesia that was given during delivery where women would effectively be, not completely unconscious, but in this sort of Twilight state of semi consciousness, while her baby was delivered, this exempting of control, very medically managed, that kind of came up from around the 1920s and this idea that the safest birth was the most medically managed one really persisted. And then around the time of the women's health movement from the sixties and seventies, so many women who wanted to reclaim control over their bodies were recognizing that these medical interventions had not contributed necessarily to improving the health and lives of women and their babies. And they began to sort of agitate from much more natural and much more women centered experience of birth and birth culture.

You know, return to births being primarily managed by female midwives, by birth companions. So it's always been this real battle ground where a woman's choice and agency is pitted against what medicine and medical culture believes is best for a woman and her baby. And of course, every birth is so completely different. You know, there can be no one system that works for everyone, for all people. But this reluctance to really focus in on what women want, need, and what they know also about their bodies has definitely contributed to the dire rates of maternal and infant mortality that we still have in the UK and the U S you know, the worst rates in the industrialized world.

And we see that these rates are particularly low for black and ethnically diverse women around which there is a history of the denial of pain, but also the denial of knowledge and authority over one's own body. And if a woman is explaining that she understands that she has a preexisting condition for example, or that she needs a certain kind of medication or is asking for pain relief that can be really important for her, and she's denied that on the basis that, you know, a racist or sexist ideology is still present at an unconscious level in that birthing room. This is why women's agency being prioritized in medical settings, especially around pregnancy, is not just placatory, it saves lives. When women are not listened to you, it leads to loss of life. And I feel this very passionately and I think around pregnancy and reproductive culture, it's so exceptionally important that we return agency to women and we stop imposing upon them these blanket ideas about what medicine believes is best.

[00:21:18] Anna: Yeah, agency, think that's something that's definitely lacking throughout all of the life of the woman, especially when it comes to her own health and, on the other side of this, we have where women don't have agency and control over the decision to carry a pregnancy to term or not. You know, this whole book is this interweaving of culture, society, and politics within the medical establishment. And I think today, a very concrete example of that is abortion. And how, even though it's twice as safe as getting your tonsils removed or having a colonoscopy, it is a leading cause of maternal death for women without access to safe, legal procedures. And a big part of that is, you know, women not having agency over what to do with their own bodies. And I recognize this is probably a very loaded question. But from your perspective, you know, looking back in time, where does this fiercely divided cultural debate stem from?

[00:22:21] Elinor: I think it stems again from complete exemption of women being allowed to have any control over their bodies. I think that abortion represents choice and control and agency in a way that always had to be curtailed. You know debates now around reproductive justice have nothing to do with the health of mothers or babies is all about social control. It's all about representing this very misogynistic idea of what women are for. Women being primarily reproductive and maintaining any unequal status quo across genders in our male dominated, still male dominated societies. , And of course, as all of us who follow current debates around reproductive justice know, stricter abortion laws will not stop abortion from happening. They will stop safe abortion happening. Throughout history, women have always understood how to terminate a pregnancy that was unwanted. There have always been methods that women have used to control their fertility. Women have never been this kind of blunt, dumb instruments, just waiting for a man to come along and tell them what to do.

Women have always had knowledge around their bodies, but women shouldn't have to resort to covert methods that can damage their health and hurt them. And sometimes lead to loss of life. When, as you say, this kind of procedure is safer than having one's tonsils or having a tooth pulled. The abortion debates in the UK really began in earnest around the 1930s, when women involved again in the working class, women's health rights, you know, looking at how best to support working class women. We're realizing that the burden of having many children, you know, not having access to reliable contraception, for example, was taking such a toll on the health and financial security of women and of their children, that they really began to gather together and debate women's rights to contraception, free contraception, to accurate advice about how to limit their families, to use the language of the time. And also that women should have free unhindered access to safe medical abortion. Now, this was a truly radical proclamation to make in the 1930s. But thank goodness we did have these kinds of debates. Exactly the kind of debates that we see now in exactly the same kind of language that is couched today were happening in the thirties. You know, these women were gathering together and men too, who supported abortion rights, were gathering together to insist that abortion should not be a medical matter and should not be up to a doctor to diagnose the need for abortion. Abortion should be about a women's right, about her agency, about her choice. And they also were very clear in their debates that making contraception and sexual health information and education freely available to women, so demystifying this culture of, oh, women don't know anything about their bodies, the white coat doctors know it all. Education, empowerment crucial to meaning that women have that control as they went along. But if they needed it, they were able to have a safe termination of their pregnancy. And in 1938, we had a landmark case in the UK of a young girl who's only 14, called miss H in the literature, who was raped by a horse guard, one of the Queen's horse guards.

And it was a very violent, gang rape and she became pregnant as a result of this attack. And her parents understood that making her go through with this pregnancy would be not only a physical burden, but psychologically, incredibly damaging for her. And they sought out the advice of a feminist doctor called Jo Malison, who was an advocate for contraception, for abortion access, for women's rights to choose.

And she recommended that this young woman were allowed a medical termination performed by a doctor, safely because of what she'd been through. An abortion at the time was illegal in the UK unless a women were certified insane. Okay. So women had no right to choose. But the case of miss H, which was, you know, debated extensively, ended up being a first tentative step towards reproductive justice in this country, because miss H was, the procedure was performed on Ms. H by a doctor, a gynecologist called Alec Born, who said, as a medical doctor, I believe that she deserves and needs to have this procedure. And after he performed the abortion, he contacted a police officer and told him I have emptied the uterus, and now I want you to arrest me. And then ensued a debate about what constituted a justification for performing abortion. And the law shifted slightly to say, okay, it was up to a doctor's discretion, if they believed and could justify that a woman's life, and that included her psychological life, were in danger were the pregnancy to continue.

So it was a subtle shift in the law, it wasn't a change of law, but it was a subtle shift in the thinking around it that began the long journey towards reproductive justice. And we have really good reproductive justice laws in the UK, but as we've seen, as we've looked around the world, around Europe and the U S at the moment, all the while abortion remains a matter of law and matter of medical discretion, our rights to that, a very precarious.

[00:28:03] Anna: Yes. And as you've pointed out, our rights are precarious and it depends on the class that you're born in, essentially the class that you're a part of because people who can afford to pay for safe abortions always have and always will, but working class and poor women have to improvise and, you know, very timely, I mean, it's been timely for a while now in the U S but if Roe gets overturned in the U S this upcoming summer, it's going to be marginalized women who pay the price, the very women that are already dying at those alarmingly high rates and all of the middle-class white women, many of whom are the ones advocating for road to be overturned, will continue to have their safe, legal abortions.

One more question on pregnancy before we move on. I learned from your book that the possibility of male birth control pill has been researched and trials for almost as long as the female pill has existed. This was news to me. What's going on, Elinor? Why do we not have a male birth control pill?

[00:29:06] Elinor: Oh, the ever green question, male birth control pill. I mean, the technology is there, right? The medication, the drug it's there it's been synthesized, but I think it's been something that no one's really wanted to fund. There was a WHO study that I quote in the book that states that it's very unlikely to be taken out and taken to mass market because it causes men to have a lower libido. And you know, a bad mood. I mean, hello, can we just all put our hands up? All of us who have ever taken birth control. And this again is a really fascinating insight into how we prioritize male sexuality and male sexual agency as a matter of health. And, you know, we don't prioritize women's sexual enjoyment as a matter of health in any way in dominant medical culture. So it's completely fine. You know, we're expected to swallow, ah, the literal hard pill of not just low libido and bad moods, but all sorts of other associated symptoms and potential health risks for, you know, the reward of having a little bit of choice over what we do with our bodies, the reward of having control.

Now I'm in no way doing down contraception, contraception is an incredible thing. But also, you know, it's always been mired in this lack of transparency and in this sort of idea that women are again, denied that agency when it comes to expressing what's happening in their bodies. You know, it was women, activists women in the early 1970s, who agitated for the FDA to insist on transparency around side effects of the first, combined, hormonal contraceptive pill, which by the way, contained about 10 times the amount of synthetic estrogen that a pill today contains.

You know, so it was women who were going to their doctors with this marvelous new things that was enabling them to have some, sexual agency and agency in their lives, but it was also making them sick. And when they were going to their doctors, the doctors of course had been told that it was completely safe and symptoms like blood clots, palpitations, you know, other potential contra-indications were not being acknowledged by the manufacturers properly.

So, you know, again and again, it's about, well, they give us a little bit of control over our bodies, a little bit of choice, but we're also expected to shoulder everything else and just put up with it. So when it came to the male pill, it's just startling that the very same symptoms we are expected to just deal with, with no help of support, were the exact reasons for not bringing the male pill to market.

[00:31:46] Anna: I mean, they're going to find no sympathy from us, so,

[00:31:52] Elinor: And I always think, you know, the male pill is really interesting because I've also read things about, people, authors of studies, assuming that men wouldn't remember to take care every day, which is fascinating to me because there's this real sort of infantilizing going on, well, we can't rely on them to take it every day. Right. But yet we're expected to police and control our bodies and kind of devote all this time to doing that. Whereas men, those poor dears, you know, can't remember to pop a pill out of a blister pack every time it's too much for them.

[00:32:26] Anna: Poor dears. They can run our nations and, uh, our medical establishment, but they can't remember to take a pill for themselves.

[00:32:35] Book excerpt: “By the beginning of the eighteenth century, humankind’s philosophical and cultural fascination with sensibility and emotion was embedded in new medical theories about women’s nervous temperaments. New medical theories about women’s nervous delicacy came thick and fast. In England and Europe, women emerged into the age of emotion enslaved by their nervous deficiencies. Women’s illnesses were easily interpreted – and dismissed – according to blanket assumptions about the weakness and inferiority of the female body and mind. Hysteria then became whatever male physicians and medical writers wanted it to be. The only definitive diagnostic sign was being a woman.”

[00:33:14] Anna: Oh, all right. So circling back to our old friend hysteria, we know at some point it became untenable to diagnose a woman as hysterical. So can you kind of talk us through, did that just go away? Did we see a kind of rebrand, you know, I think in your book, this really came to light in the 19th and 20th centuries as we start to see things like neurosis and other hormonal diagnoses. So how do we kind of see that get rebranded that leads us up to where we are today?

[00:33:48] Elinor: Hysteria is really a fascinating concept because it was a male physician created diagnostic category for almost any symptom of a woman's body and mind. And it never had a clear and defined definition because it wasn't a real disease. It was a set of assumptions about women's bodies that would given the label hysteria.

And it had many different definitions because lots of different physicians, you know, gynecologists, neurologists, between kind of 17 hundreds and the 19 hundreds decided that hysteria was something different. It was either reproductive disorder or it was a neurological disorder or it was a mental illness.

You know, it had lots of different forms. It was very shape-shifting, but ultimately it was this umbrella category that served as a buffer for male physicians ignorance often about what might have actually been going on in a woman's body or mind. So hysteria began to lose its power as a medical diagnosis as you say, around the late 19th century. A lot of physicians were coming together to say that hysteria was never real, one physician called it a will of the wisp of, you know, medical diagnoses. And they realized that it's kind of spurious vagueness was meant that it wasn't really teneble.

And that's when it also coincided with the time when other chronic diseases began to be named and documented. So hysteria was this sort of puzzle, you know, wrapped in an enigma, wrapped in a mystery, and it was also an opportunity. So it had this opportunity to be defined. So around the end of the 19th century, it was taken up in psychology and psychoanalysis.

And we see it first with the Salpêtrière asylum in Paris that was headed up at the time by the neurologist at Jean-Martin Charcot, and Charcot was very interested in female hysteria or in the symptoms of hysteria. And the Salpêtrière was an asylum that cared for use that term loosely for many working class women in Paris. And there was a ward of so-called hysterics at the Salpêtrière clinic of whom Charcot took particular interest in a few of them. And he believed hysteria to be a psychological condition that could be awakened through the body. So it was some sort of psychological disturbance manifesting in physical symptoms. And he believed that these physical symptoms could be drawn out on the hypnosis.

And so he performed his so-called hysteric Queens who were patients in his wards on the stage of the lecture theater at the Salpêtrière in these notorious, Tuesday morning lectures that were attended by the kind of artistic and literary criteria of Paris at the time. And there are many debates about whether these women, these hysteric Queens knew what they were doing, whether they were performing, whether they really were under the influence of this monster hypnotist. But essentially, this is the point at which hysteria moves from this strange all encompassing medical diagnosis to being very firmly a psychological psychoanalytical, condition associated with women losing control and very firmly associated with women's sort of unbidden sexual impulses. And from there, it's a short hop, skip, and a jump to Freud.

Sigmund Freud witnessed these lectures of the Salpêtrière. He studied with Charcot and when he came to define hysteria through his talking therapies, hysteria was very much this manifestation of, of sexual disorder right in women. And it was that point that history really moved, you know, from the clinic to the couch, as it were in medicine and became a psychiatric diagnosis rather than a physical one. And again, hysteria doesn't exist. This is my contention, hysteria isn't anything, it doesn't exist. It's been a category that has served male physicians, male gynecologists, male neurologists, male psychoanalysts, in terms of pathologizing women and setting up this culture of hysteria, not being a medical diagnosis, but in fact, being a slur, you know, don't be hysterical. Its this slur. It means losing control. It means . Screaming and fainting. And that's where we get that origin story from. I believe it's when that real move from clinic to couch.

[00:38:38] Anna: What I noticed throughout history as the medical establishment, made revolutionary discoveries and continued to evolve and essentially disprove all of their theories about women, they just revised them to fit the same conclusion. So it's not their womb, it's their nerves. It's not their nerves, it's their education. It's not their education, it's the hormones. And it just continuously evolved, always putting that conclusion first and then just adapting how we get there. And, you know, I think that it's true that a lot of these diseases that we see today, lupus, endometriosis, everything that kind of stems from this history, that even when we find the cause and cure, if we don't change our institutions and our culture, we're just gonna do this all over again to another disease. You know, hysteria is going to keep lurking in the background and it'll come up in a different way. So, you know, what's it gonna take to stop this cycle for the next generation?

[00:39:43] Elinor: In one of the things that I think it would take to stop this cycle is facing up to medicines historic complicity in enforcing and creating often these ideas. You know, these antiquated mythologies that have no basis in fact have no place in current medical knowledge. And gendered ideas about how women relate to their bodies, relate to their pain, how they express and speak about their bodies also have no place in our current medical landscape.

I do feel like we're at a moment of reckoning with this culture. And it makes me so pleased and hopeful to see how much incredible work is happening in this space from, women physicians and advocates, to, people talking about their complex conditions and what it's really like to be unwell, and forums on Instagram creating community.

I do feel like we're having this moment of reckoning where medical neglect, medical dismissal is no longer sort of shrouded in shame and silence and secrecy, but is actually something that is becoming part of our everyday conversation. As women are marginalized people, especially. So I'm really hopeful in that sense. I think continuing to press this agenda, you know, there's a lot of work for us all to do, and we shouldn't have to work that hard just to create a culture in which we are cared for and given the opportunity to live healthful lives. We can learn from history that activism, agitation, conversation, building community has always been the route to change, always.

And it's always created meaningful change. You know, without that kind of work done by women and the allies throughout history, we wouldn't have, the expansion of women's rights. We wouldn't have suffrage. We wouldn't have maternal health centres. We wouldn't have Roe. You know, this conversation that we're having now, we wouldn't have.

So the more we talk, the more we collaborate, the more we join together, the stronger we are. And you mentioned this earlier, but I do completely believe that doctors are not consciously out to harm women. I think that doctors, male or female, they commit to this career, a difficult career because they care. But these gender biases, they sit above the level of individual prejudice, right? If they're not present in somebody's manner or dynamic as a doctor or a healthcare professional, they lurk somewhere in the knowledge, you know, they're shadowed in the textbooks, they are there in the way the data is interpreted.

So it's a systemic issue, not an individual issue. And I always praise the care I've had under the NHS. And I've also had some bad experiences, but this was part of what enabled me to think differently about what happened to me is going back through history and seeing how much we have to untangle, you know, how much we've got to face up to and say goodbye to consigned to the past. As we move forward, hopefully to more equitable health culture for everybody.

[00:42:54] Anna: And we can stop calling women hysterical.

[00:42:57] Elinor: Absolutely we can expunge hysterical from the record.

[00:43:03] Anna: Um, and speaking of making healthcare better for everybody, you know, I always like to ask how the topics that we're discussing impact men.

[00:43:11] Overdub: “And now for: “men are losers too”... in gender inequality of course. These are not "women's" issues, these are everyone's issues, because as long as women are held back from their full potential, so are we all.”

[00:43:26] Anna: Can you tell us how are men impacted by the legacy of this one-sided medical institution and what can they stand to gain?

[00:43:34] Elinor: Absolutely. There are studies about the impact of gender bias in diagnosis of pain conditions, for example, the show that the way that women express pain, which tends to be more narrativized, tends to be more based in storytelling or sort of a social form of communication, that stands against them in terms of how the believable they're perceived to be.

Okay, men, not all men, of course, but a lot of men tend to express pain and other symptoms around illness in a very straightforward way. They might say, my hand hurts here. It's hurt for two weeks. They wouldn't necessarily say, well, my hand hurt at night, you know, I'm really worried about the impact of my children because I'm having trouble doing things for them. I don't want them to see me in pain. You know, a woman tends to narrativize, men tend to be very straightforward. Men are not socialized, in other words, to speak about their bodies, to speak about their pain.

Women are. The fact that we're socialized to speak more about our bodies, more about our pain stands against us in medical settings, but it also stands against men too, because it means we're in this culture where men are less likely to go to the doctor. They put off going to the doctor. They're not socialized to articulate what's happening in their bodies. They're not socialized to speak in a way that makes them perhaps vulnerable. And of course that contributes very negatively to men's physical and importantly mental health. So once we expunge these gender biases, that assume women to be overly emotional, exaggerated, not to be trusted when it comes to their bodies, we're also by extension addressing this idea that men are always strong, always stoical, you know, which damages them. So when I talk about how we can improve the culture, what I imagined might happen for the future, what I would really love to see is a health and medical culture, where everyone is treated as a human being first, met on their own terms as a human being and not seen through the prism of gender first, which I believe is what happens now. I believe the assumptions about gender cloud objective knowledge. And if everyone's just seen as a human and met in that way, then again, this isn't placatory, this can improve diagnostic times. It can reduce burden on our health services. It can lead to huge improvements in the health and welfare of people all over the world.

[00:46:12] Anna: I think that that brings up a really great point, you know, you have on the one hand, women being treated and men differently, according to their genders, and you want them to be seen as just human. But then on the other hand, you have women being lumped in with men when it comes to research and studying what the effects are for things like medication, what they have on the body. So how do you kind of balance that out then?

[00:46:40] Elinor: Well, what of course you have to do is revolutionalize the culture of clinical and medical testing and trialing things like medications by studying all humans, all stages of the life cycle, all stages of the hormonal cycle, all different gender presentations or different races or different economic situations because no one woman or no one men are part of a monolith, right?

Men have fluctuating hormones. When we say women who do we mean, you know, we're not a monolith. And at the moment, there's this insistence on, this historical insistence, I should say, on a white able-bodied male of about 35 being this kind of standard human being, that's not just about assuming male superiority. That's about denying all other kinds of difference. And that's the way I tend to look at it. And like, yeah, women were exempted from major clinical trials, especially in medications until about the early 1990s, primarily because the fears around the effects of untested drugs on women's reproductive capacities and upon their pregnancies.

And this was precipitated by the very real scandal around the drug thalidomide that was given to women in the forties and fifties for morning sickness, for sickness during pregnancy. And it was very poorly tested and turned out to have really profound effects on the development of unborn babies. And so when clinical trials were exempting women, they were exempting women of reproductive potential. And essentially that means all women.

Even women whose husbands had had this vasectomies, even women who are on long-term contraception, even women who are older, you know, this is what medical history has done is created this idea that women are reproductive first, human secondarily. And the only way to rectify this culture is to have clinical and biomedical tests and trials done on the fullest possible diverse range of human beings. So that we really know how a drug affects a woman with a long-term condition, a woman unable to have children. You know, we need to know, and this insistence on standardizing, that's what it's done is exempted the idea that the other people are worthy of being thought about and cared for.

[00:49:06] Anna: Hmm. And just doesn't quite add up to exempt from clinical trials and then prescribe those exact medications to that population of people at the same time, so. All right. if people take one thing away from this conversation today, what would you want it to be?

[00:49:25] Elinor: I would want it to be, remember, your body is your own, your feelings and experiences of your own body are yours. And even though medical encounters may feel demoralizing sometimes, or frustrating, you are the most reliable narrator of what is happening in your body and in your mind. And it can be hard, you know, our culture and society can diminish that sense that we know we do know what's happening and we can speak to that. But I think if you keep that in your mind, you know, negotiate your body and your health from the position that you own your body, your body is yours. Then I just think that can help you feel more empowered as you negotiate the sometimes complex and difficult journey around your health and medical needs.

[00:50:16] Anna: Absolutely stop that self fulfilling prophecy. And as you said, speaking out about your own body is profoundly feminist.

[00:50:24] Overdub: And now for: “Your Story”, the part where you are invited to reflect on this story as it relates to your own life - think about it, write about it, talk about it, and if you wish, share with the community. Whether or not you are listening in real-time, if you send in your thoughts, experiences, questions, and recommendations, they may be included in a future listener-led episode. Check out the link in the show notes, or revisit the Your Story episode, to learn more. Remember, no matter your story, you are not alone in your experience, and there is power in our collective realisation of this.

[00:51:06] Anna: So as listeners come away from this hour with you, are there any questions that you want to put forth to them? What can they pay attention to as they go about their lives? Are there ways they can reflect on their own experiences or ideas or organization you would be keen to hear about from them?

[00:51:22] Elinor: I always have been really startled and really moved by the stories that women have shared with me since the books been published. And I think that speaking out about something that's happened to your body can be so important in beginning to gain that sense that your body is your own, right? And so I'd love to hear a story or an experience and not just negative medical ones, but ones that are joyful too.