Episode 5: Embodied Knowledge

 

In the late 1960s, it was difficult to access basic information about women's health. Jane, frustrated by her doctors' paternalistic attitude, decided to do more research about her own body so she could advocate for herself. With a group of activists in Boston, Jane and 11 others began taking matters into their own hands and went on to write the groundbreaking book “Our Bodies, Ourselves,” which redefined the women’s health movement. In today's episode, we explore how one group of women came together to build community, educate themselves, and change how we talk about and treat women's bodies.

Credits:

This episode was produced by Hannah Barg and Noa Fleischacker. Our editor is Ellen Mayer. We also received editorial support from Valeria Donoso, Rebecca Magnan, Rebecca Ostroff, Daniela Tolchinsky, Arianna Skibell, Erisa Apantaku, and Hannah Srajer. Thank you to Judy Norsigian, Kiki Zeldes, Pamela Berger, Marcie Richardson, Elizabeth Stewart, Joan Fogel, Naomi Rogers, Jennifer Nelson, Paula Kamen, Pam Williams and Kath Mazzella for their contributions to this episode.

Promo: How to Do the Pot

 
 

Transcript

Ep 5: Embodied Knowledge

Promo

Noa: Before we start, I want to tell you about another podcast on chronic pain and health. The show is called How to Do the Pot. Each episode guides you through different aspects of legal cannabis. Like our show, they feature doctors and experts who break down the science. And they explore topics like pelvic pain, sleep, and migraines. 

The show is everything you’ve wanted to know, but maybe been afraid to ask, about using cannabis to treat chronic pain and other conditions. You can listen to How to Do the Pot wherever you’re listening to this right now. 

Episode

Today I’m passing over the hosting responsibility to my co-producer, Hannah Barg. 

A quick note on language before we dive in. At Tight Lipped we do our best to talk about vulvovaginal pain conditions in gender neutral terms. We know that not everyone who has a vulva, vagina or uterus is a woman. And that there are many who identify as women who don’t have these body parts. We want to give you a heads up that in this episode, we will be using the term “women” more often than usual. We’ll be diving into the history of a particular group of cisgender women - at a time when language around gender was very different from today. 

Judy Norsigian: For the first time, we were doing research and writing papers that were about us for us. We wanted to share both the excitement and the material we were learning with our sisters. We saw ourselves differently and our lives began to change.

Jane Pincus: Excited and nervous (we were just women; what authority did we have in matters of medicine and health?), we offered a course to sisters in women’s liberation. 

Pamela Berger: It was exciting to learn new facts about our bodies, but it was even more exciting to talk about how we felt about our bodies, how we felt about ourselves, how we could become more autonomous human beings, 

Kiki Zeldes: How we could act together on our collective knowledge to  change the health care system for women and for all people.

Judy Norsigian: We hope this will be true for you, too. 

Hannah: Those are excerpts from an early edition of Our Bodies, Ourselves -- a book you might have heard of, which is about women’s health, sexuality and reproduction. Today, it’s available in 33 languages and has sold over 4 million copies. So, it’s a pretty big deal.

But when the first edition came out fifty years ago, their work was considered radical -- because they talked openly about reproductive health. They broke down stigma. And they wanted to learn about their own bodies. 

Hannah: This is Tight Lipped, a public conversation about a private type of pain. I’m Hannah.

On this show we ask big questions about chronic vaginal and vulvar pain -- and pelvic floor dysfunction. We talk about painful sex. And shame. And the politics surrounding these conditions that we often keep secret. 

If you’re a millennial like me, then most likely you grew up with at least some education about anatomy, periods, and sex -- even if it was lacking or missing crucial details. Maybe you had an  hour in school about menstrual cycles. Or you learned from your friend’s older sibling, or from the book “The Care and Keeping of You,” which my parents bought me. 

Today, we’re going back 50 years to when it was much harder to access even basic information about women’s health. That was until a group of activists took matters into their own hands. They decided to speak up about misogyny in the doctor’s office -- and they changed the medical landscape.

This is a story of how people who thought they were alone, came together to build community. They organized around their frustrations with healthcare treatment. And we want to learn from them. Because, in many ways, their stories aren’t so different from our own. 

Hannah: We’re starting in the late 1960s when the feminist movement was taking off. And, part of that movement was focused on healthcare. Feminists were fighting to change how the US healthcare system talked about and treated women’s bodies.

Naomi Rogers is a professor at Yale University. And her research focuses on the history of medicine. She says that, at that time, medical schools and individual doctors in the United States, had a paternalistic attitude towards female patients. And women were getting frustrated with not having autonomy over their own bodies. 

Naomi Rogers: So the doctors had often been able to say, "I can handle this," or "don't worry your pretty little head about it"....And women who tried to say, no you're not listening to me or you're not taking me seriously, were considered aggressive or obnoxious patients, or just hysterical.  

Hannah: The women started to question whether they were getting the care they needed and deserved.

Naomi Rogers: Increasingly there was a sort of sense of, really? Do they really know what they're talking about? Are they telling me the truth? Do they even know the truth? Are they in fact the great experts that they have been trained to think themselves as? 

Hannah: They recognized that they were entirely dependent on their doctors for care and information. And they didn’t know enough about their own bodies. 

Naomi Rogers: The idea that you can't simply trust that if you go to your physician and ask questions that you'll be told the truth, and that you'll be told all of the truth. And that you need to be an educated consumer. 

Hannah: This probably sounds familiar. We’ve heard stories from many people who became experts on their own conditions after medical providers didn’t have the answers. 

At the time, feminists across the country were starting to talk about women’s health. Like at the Female Liberation Conference at Emmanuel College in Boston in 1969. On Sunday afternoon of the conference, there was a workshop called “Women and Their Bodies.” Afterwards, many participants wanted to keep the conversation going. So they formed a reading group in Boston -- and called it the “Doctor’s Group.”

There were twelve women in the original group.

Naomi Rogers: And what they did is they came together and firstly they just told stories to each other about the ways that they had been treated by their physician...And then they began to do research to find out….Well, what did medical texts say about certain kinds of women's conditions and so on. 

Hannah: The group was made up mostly of young, white, middle class women. Much of the Women’s Health Movement prioritized white feminists’ perspectives and concerns. Black women and working-class women were dealing with things like access to care, sterilization abuse, and other medical mistreatment -- and it’s important to note that these voices and issues were not at the forefront, and were often left out, of the Women’s Health Movement. 

One member of the Doctor’s Group was Jane Pincus. 

Janes Pincus: I am 82 years old, I don't feel it, but I'm learning a lot about what it's like to grow older.

Hannah: Jane was already involved in politics when she showed up to the conference and started going to the Doctor’s Group meetings. She’d been involved in the Civil Rights movement and the Anti-War movement. But this was a different kind of activism for her. Because it was about something very intimate and personal. 

 Jane Pincus: Basically I never learned much of anything about my body. I just used it, lived it.

Hannah: As a young adult, Jane didn’t have regular periods. 

Jane Pincus: I remember my mother brought me to an OB/GYN in New York City and he said to me, just wait till you get married, it'll be okay.

Hannah: So, Jane figured it would work itself out. And, for the most part, she felt totally healthy. But, every so often, she would get this stabbing pain on her right side.

Jane Pincus: One night I felt this very sharp pain in my side and then a kind of warm feeling and then we went to the emergency room but nobody really had too much idea of what that was all about. 

Hannah: This happened multiple times throughout Jane’s 20s. And once she got married, she struggled to get pregnant. 

Jane Pincus: I went through infertility treatments, probes up my uterus, which were incredibly painful, but that wasn't my problem.

Hannah: Finally, she saw a doctor who identified what was wrong. 

Jane Pincus: And then it turned out that all along I had cysts on my ovaries and that was never really really diagnosed until finally when I was in my late twenties the doctor said, oh my god you have a cyst the size of a grapefruit.

Hannah: The cysts on her ovaries were causing her infertility -- as well as irregular periods and the pain. As treatment, the doctor suggested surgery.

Jane Pincus: So I had the operation and three months later I conceived my daughter.

Hannah: Jane still felt like she didn’t know enough about her own body. Or what to expect from pregnancy and childbirth. 

Jane Pincus: The books on women's reproduction were very male oriented, very chauvinistic, very much relating to women as passive objects.

Hannah: When it was time to give birth, Jane’s doctor told her that she could be induced or wait for labor to begin naturally. He didn’t explain the risks or benefits of either option. So without much information, Jane agreed to have her labor induced that day.

Alice Rothchild: That's very characteristic of obstetrics in those days. 

Hannah: That’s Dr. Alice Rothchild, a retired OB/GYN. She’s talking about the way doctors treated their women patients:

Alice Rothchild: You didn't explain things to them, you just said, this is what we need to do, hon, and we're going to take care of you and everything will be alright, dear and end of story.

Hannah: As far as Jane was concerned her daughter’s birth went totally fine - after all, this was her first baby and she really didn’t know what was considered normal. She went home with a healthy baby girl.

Four years later Jane was pregnant again. She went in for a prenatal visit. 

Jane Pincus: I looked at my medical record, saw what was written on it, and said to the doctor, this is not my record, this is someone else's. And he said, no that's your record.

Hannah: Jane was confused. She didn’t recognize what was written in the chart about her first childbirth. 

Jane Pincus: I realized I'd had things happen to me during that first labor that were indeed dangerous.

Hannah: Jane had been given shots of Pitocin to induce labor. Usually, patients start with a very low dose.

Alice Rothchild: And if someone is given too much of a dose, they can have these tetanic contractions, which can rupture the uterus, can cause fetal distress. 

Hannah: That’s what happened to Jane. Dr. Rothschild says Pitocin is typically given through an IV, but Jane was given shots of it into her muscles. 

Alice Rothchild: Given that assumption, this was, you know, malpractice to give intramuscular Pitocin…..

Hannah: Like Dr. Rothschild said, this was medical malpractice. Jane’s prolonged contractions prevented oxygen from getting to her baby. 

Jane Pincus: My contractions were too strong, and then they slowed them down with demerol, I needed forceps to have my baby pulled out because her heartbeat was decelerating.  

Hannah: Months after the appointment where she saw her medical record, Jane went into labor for the second time. This time everything was less complicated and she gave birth to her son.

But now that Jane knew what happened during her daughter’s birth, she felt betrayed by her doctors.  

Jane Pincus: Afterwards...I began reading about the pitfalls of Pitocin, the dangers and I became very angry and very determined to do something to inform other women of what I'd been through.

Hannah: Jane wanted to act. So she joined the Doctor’s Group. Every member in the group had what they called a “doctor story.” A story of being treated in a paternalistic way, often with dangerous implications. Through sharing, they started to recognize a larger pattern. They realized they weren’t being given enough information - or authority - to make decisions about their own health. 

Jane Pincus: There was a feeling in the air that there was something wrong with some of the things that were happening to us, and that perhaps we could start getting together and working for change. Although I'm not sure we really had the language for that. 

Hannah: Like others in the group, Jane’s trust in her medical providers had started to erode. 

Jane Pincus: But we felt that we knew about our bodies….And we knew often doctors were mostly male at that time would treat us with great condescension.

Hannah: But after coming together, the women in the group knew they deserved better. 

Jane Pincus: We somehow together knew we were more than that and so we had a sense of entitlement, perhaps as college-educated women, we had a sense of power, individual power and collective power. 

Hannah: What began as sharing stories grew into something larger. They wanted to educate themselves.

Naomi Rogers: Once these women began to recognize that it wasn't just a matter of collecting information already available, right, that in fact that had to sort of seek out and re-critique much of what was around, they began to think of themselves as really active researchers.

Hannah: That’s Professor Naomi Rogers again, who researches the History of Medicine. She says that women used their own bodies as the basis of their research. 

Naomi Rogers: Which some scholars have called "embodied knowledge." That in other words, you actually have experience and understanding about particular conditions, if you've lived through it yourself, or continue to live through it. 

Hannah: “Embodied knowledge” became an important concept for these activists. They valued scientific expertise. But they also saw that there was a clear bias - in how women were conceived as patients, or potential research subjects. And so they began to interrogate and rethink existing information, to ask questions that hadn’t been asked before.

Naomi Rogers: So instead of only being a question of collecting information and then somehow providing it to women who needed to know, they increasingly became more critical of medical knowledge itself.

Hannah: There were some people in the medical field that the Doctors Group did trust. Like Dr. Alice Rothchild who you heard from earlier. Dr. Rothchild was one of the only women in her class since this was before a wave of women started going to medical school.

Alice Rothchild: And it was a pretty stunning experience for me because I’d been to a women’s college where you know, there were no men around to oppress us…

Hannah: Being a med student was politicizing for Dr. Rothchild --  much in the same way that being a patient was politicizing for Jane. 

Alice Rothchild: There were Playboy bunnies in the microbiology slides and we had a psychiatrist who gave a lecture where he actually scolded the women in the class and told us we were taking the place of a man who would be much more productive.

Hannah: She found that the head of the OBGYN department was also perpetuating sexist ideas. 

Alice Rothchild: And so this was like a rapid radicalization program for me. Um, so I came upon my feminism very honestly.

Hannah: In many ways, Dr. Rothchild was having a parallel experience to the women in the Doctor’s Group. She was trying to find ways to speak up for herself and advocate for women to be taken seriously as patients. 

The Doctor’s Group reached out to Dr. Rothchild to edit sections of the research they were compiling. They needed someone with medical expertise to work with them. 

Alice  Rothchild: Even though medical students have absolutely no medical expertise. I thought I had some….And so I began to be one of the people who would review the medical texts and try to, you know, fact check them as best I could and that began a whole alliance with the collective. 

Hannah: Meanwhile, the Doctor’s Group found other ways to share what they were learning. They found a space at MIT and taught an informal class for other women.

Jane Pincus: The first session was on sexuality and there was a blackboard there and the word masturbation on the blackboard, clitoris, some women had never heard them spoken out loud.

Hannah: They met regularly and discussed topics like birth control, nutrition, childbirth, post partum, etc. And there were live demonstrations. 

Jane Pincus: You'd find an auditorium of women, in front on a table, a woman was lying with her legs spread and the speculum in her vagina and a flashlight and people from the audience would come up and look to see what they could see, to learn.

Hannah: This was an exciting and radical kind of education. Many women showed up not knowing what their own vulvas looked like -- let alone their cervixes. All across the country there were different kinds of gatherings like this. Some focused on what they called “self-help.” 

Jane Pincus: Carol Downer in California had her self-help group where they'd sit around in a circle naked and study their cervixes, that kind of thing...It was kind of an extraordinary time.

Hannah: Groups like this took it upon themselves to teach each other how to do self exams. They made people feel comfortable talking about taboo topics.

The Boston Doctor’s Group wanted to spread what they’d learned to an even wider audience. They decided to put together a booklet called “Women and Their Bodies.” Jane wrote the chapter on pregnancy and childbirth. When I asked her to read from the original edition, she got very emotional.

Jane Pincus: I’m gonna cry...

Jane Pincus: I didn’t know that my doctors, the “best in town,” were as ignorant as I....Sometimes I blame myself, but not for long. My tears still turn to anger as they have for years. When I am lucky enough to be present at the births of my friends' children, the simplicity and joy of these births affirm and vindicate all of us who work toward loving and informed care for all childbearing women. 

Hannah: Jane was motivated to write about pregnancy and childbirth because of how she’d been treated during her daughter’s birth. She channeled her anger into educating herself, and shared her findings in the booklet. And once it was out, she started to hear from people all over the country. They wrote in to share their experiences and tell their own stories. Jane, and the other members of the group, knew that this was just the start. In 1973, the booklet became the book “Our Bodies, Ourselves.” It was published by Simon & Schuster.  

Alice Rothchild: The attitude of the book and the idea that you actually have to treat women with respect as intelligent people really became the foundation for how I practice obstetrics and gynecology. So it gave me, you know, a place to identify with, and a model of behavior that I thought I would want to emulate. 

Hannah: Our Bodies, Ourselves had a huge impact on Dr. Alice Rothchild as a practitioner. The group established the idea that you have to explain and get real consent from patients. And built a new model for doctor-patient relationships. Dr. Rothchild went on to open her own practice, along with Dr. Marcie Richardson — another editor of the book. And they gave every new patient a copy of Our Bodies, Ourselves. 

The work that Jane and the others did with Our Bodies, Ourselves was revolutionary and groundbreaking for its time. The collective rejected gender norms and broke open the floodgates to talk about health and sexuality. They introduced concepts into public discourse that we take for granted today, such as giving patients all the information they need to make an informed decision. And that women can become experts in their own health. 

Yet even though Jane herself struggled with pain from ovarian cysts, the group didn’t talk much about conditions that cause pelvic and vaginal pain. This was largely because at the time, very little was known about vulvovaginal pain conditions. 

Women who had chronic vulvar pain were often sent to therapists, there were few available treatments. And they were told their pain was because they were angry with their husbands. 

Dr. Alice Rothchild says this was common for how the medical system treated women’s pain generally, in the 1970s. 

Alice Rothchild: It was sort of chalked up to neurosis. That a lot of women's complaints were thought to be psychosomatic, like menstrual cramps.

Hannah: According to doctors, if a woman complained of pain with sex, it was because she must be ambivalent about her sexuality -- or her role as a woman. Dr. Rothchild found her old obstetrics textbook, from 1975. In talking about conditions that cause pain with sex, like vaginismus, it said….

Alice Rothchild: "The symptoms can be unconscious expression of anger, revenge, control, rejection, and fear directed toward the man." Dun dun dun. 

Hannah: In some ways, this attitude toward pain was mirrored by the Feminist and Women’s Health Movements. The feminist movement had started to establish that women are sexual beings and have sexual desires.

Maya Dusenbery: And sort of ironically at that point there was actually a kind of shift to placing the blame for this problem, which had been seen as a couple’s problem, to actually seeing it more as rooted in the individual woman’s psychology. 

Hannah: That’s author Maya Dusenbury, who you may remember from our second episode. 

Maya Dusenbery: So as we kind of started to believe that liberated women like sex, if you were a women who couldn’t have sex because of unexplained vulvar pain then it must be rooted in your own kind of hangups about sex. 

Hannah: The Feminist Movement as a whole did not focus on pain or invisible illnesses. Partially because they were focused on the basics  of reproductive health - birth control, pregnancy, abortion.

But according to Professor Naomi Rogers, leaving pain out of the conversation was not merely an oversight. It was a political decision.Some feminists were concerned that talking about physical pain or distress might demonstrate weakness -- and undermine their cause.

Naomi Rogers: So it's certainly true that the notion of a desperate, victimized, pain-filled woman, was not the kind of depiction that feminists sought. 

Hannah: Feminists wanted to be taken seriously, they wanted to be seen as potential experts. 

Naomi Rogers: The kind of image of a healthy woman that feminists wanted to project and also to develop in reality and this was absolutely somebody who was competent to look after her own life, her own bank account, get her any kind of job that she deserved to get, to get equal pay.

Hannah: So because of this, some feminists attributed pain to the patriarchy. 

Naomi Rogers: So for example, do you feel stomach pain? Well is that perhaps because you're unhappy with your husband. And that your body responds to that by giving you something that you can articulate as a somatic problem.

Hannah: If you had pain or discomfort, you were stereotyped as someone who hadn’t developed a feminist consciousness. It was because you were suffering from your social role. And with this understanding, how were you supposed to cure your chronic pain or illness? By becoming politically active.

Naomi Rogers: Women who concentrated what seemed like a little bit too much on how bad they felt, in a way were seen as women who hadn't yet taken on these other more positive, hopeful values of the feminist body. 

Hannah: At the time, all of this put women living with chronic pain in a difficult position. Like Mary Lou Ballweg, who has endometriosis and was involved in the Women’s Health Movement. 

Mary Lou Ballweg: I'm a feminist going way back - but so we were horrified to discover that we weren't all that welcome with our cause. 

Hannah: In the 1970’s, Mary Lou, like others, realized she wasn’t getting the answers she needed from her doctors. She was going to have to figure it out herself. So she searched for other people who shared her symptoms.

Mary Lou Ballweg: And I started asking everyone I knew if they knew anybody with endometriosis. I remember approaching a woman at a party and saying, “I heard you have endometriosis”...she backed away from me because, you know, it was still considered very shameful and private. 

Hannah: Mary Lou was excited about the communities that were forming as part of the Women’s Health Movement. But there wasn’t anything for people like her. She ultimately realized she needed to start her own self-help group, specifically for people with endometriosis. And that became the Endometriosis Association. 

Some of this changed over time. By the early 1980s, there was more of a discussion about endometriosis - and Mary Lou wrote a chapter about it for a later edition of Our Bodies, Ourselves.

Mary Lou Ballweg: it covered some basics so that some women might say, "Wait a minute, that's me... this pain that I'm having, that sounds like me. I need to do something about it." And that, I think, is a very worthy goal - that women take their own body and pain seriously and basically stand up for themselves.

Hannah: Later editions of Our Bodies, Ourselves, also incorporated sections on chronic pelvic and vulvovaginal pain conditions, reflecting a growing acceptance to talk about women’s pain. The book changed in other ways, too. 

Jane Pincus: When we first wrote, we were totally free to say what we wanted and that's I think what gave the book a lot of power...We spoke from our anger, from our passion, from our hearts, from our experiences, and that evolved over time into a lot more medical information.

Hannah: Many of the founders of Our Bodies, Ourselves remained involved for decades. Including Jane who worked on the editions from 1969 to 2005. In fact, the group still has weekly calls to check in with each other! 

Jane Pincus: We were part of a much greater movement, just as the “me too” movement today has coalesced. You know, we were also part of an exciting time in history when we felt we could change what our doctors’ thought we could tell them what we needed, they would do what we asked them to do.

Hannah: Sharing stories, learning about their own bodies, and teaching each other was life-changing for many of the women involved. They became better advocates for their own care and treatment and were able to make informed medical choices.

Jane looks back now, fifty years later, and realizes that their work was necessary, but insufficient in changing medical institutions.

Jane Pincus: Back then we didn't have a sense for how structured misogyny is in the United States now we know a lot more about those structures, we're not so naive but it turns out that we're fighting still against forces that are very great.

Hannah: Thanks to the work of feminists and activists before us, today we have a clearer understanding of just how entrenched misogyny is in our healthcare system. And because of that, we still have a lot of work to do.

Jane Pincus: You're doing exactly what we did and you're doing it in a different climate and a different time but there is the same edge to it because of all the awful things that are happening in regards to women's health. You know more about the systems that keep us from learning about ourselves.

Hannah: I want to repeat that, so it sticks with you: “The systems that keep us from learning about ourselves.” There’s so much we’re up against when it comes to trying to understand our own bodies and health.

Jane and the Doctor’s Group started a conversation fifty years ago and it’s our job to continue their work today. We need to talk publicly about things that are considered private, just like they did. We need to ask critical questions about our relationship to doctors, medical knowledge, and the care we’re receiving. And we need to build community and break down stigma and silence. Just like Jane and so many others did in the 1960s and 70s. We stand on the shoulders of giants and now it’s up to us to continue the work.

Credits

Thanks for listening! We’re excited to share something new with you all, called Tight Lipped Presents. For the next couple of months, we’ll be sharing episodes from other podcasts that have inspired us. These episodes will be focused on chronic vulvovaginal and pelvic pain conditions -- and healthcare more broadly.

Make sure to subscribe wherever you’re listening now to get these episodes in your feed! And, follow us on instagram -- at tightlippedpod -- to stay up to date. 

This episode was produced by me, Hannah Barg, and Noa Fleischacker. Our editor is Ellen Mayer. We also received editorial support from Valeria Donoso, Rebecca Magnan, Rebecca Ostroff, Daniela Tolchinsky, Arianna Skibell, Erisa Apantaku, and Hannah Srajer. Thank you to Judy Norsigian, Kiki Zeldes, Pamela Berger, Marcie Richardson, Elizabeth Stewart, Joan Fogel, Naomi Rogers, Jennifer Nelson, Paula Kamen, Pam Williams and Kath Mazzella for their contributions to this episode.

Our episode art this season is designed by Arielle Stein and our logo is from Gaby Escovar. Melissa Guller at Wit & Wire designed our website - you can check it out at tightlippedpod.com. The music you hear is from Blue Dot Sessions. 

We’re so grateful to have the support of our sponsors. This season is supported by The Vagina Collective, the National Vulvodynia Association and the Dorot Fellowship Alumni Leadership Award. Thank you so much and we’ll be back soon.

 

 
Hannah Barg