COGS 1st International Meeting (2020): Talks

Keynote: Sex and Gender in Treatment Guidelines, Diagnostic Practices, and Anatomical Knowledge

Ericka Johnson (Linköping University)
January 9, 2020

Thank you, Gillian, for having me here, thank you all of you for letting me come here, and thank you for an amazing conversation yesterday.

It’s not often that a person is invited to a room as big as this, where one can almost sing to the choir, or preach to the choir, this is really nice. And I was really inspired by the very first ideas that came up in conversations yesterday, and the talks have focused on lots of similar stuff. So, thank you very much.

As john said, I work at the department of gender studies, so I’m going to talk today about sex and gender, and where I find them, and how I find them working together in three different places.

I have a background in medical sociology, but also science and technology studies. Because I come from a department called Tema, which means in English maybe thematic studies, it’s an interdisciplinary department, it’s existed for almost 30 years at our university and it’s one of the first and kind of a rare department that tries truly to be interdisciplinary. This doesn’t always succeed, we don’t have lots of medical doctors working with us, we don’t have lots of technology people working with us, but we do have some. We are however primarily in the social sciences and humanities and try to work across those borders too which can sometimes be as challenging as working across faculties.

I work with Jill, because Jill is the best professor at Tema Genus, weekly gender studies and health care, and we work together under a rubric, or we’re both trying to do research under group called the bodies of health. And the bodies of health is sort of a place w here we try to work around questions of what produces the body, and the really diverse understandings of bodies that we have, and how this is implanted in different types of situations.

So other people who we work with, are looking at things like feminist studies of screening practices, sort of a critique of medical screening, as well as asking what screenings do as it produces identities for patients and for larger population groups. We have some colleagues who work on sexual violence and a lot of it is looking at intimate partner violence, but also intimate partner violence as experienced by men. We also have some people working with consent and questions of consent, which has become a legal issue in Sweden recently, as we’ve changed our laws about what does consent mean, and how to define it. We have some people working with non-binary identities, and particular how non binary identities challenge very traditional Sweden understandings of sex and its way of legislation that tries to produce gender equality and tries to measure gender equality, and if we suddenly step out of this binary about this attitude to our statistics, and how do we change our legal understandings of identity that way. We have some people working on technology, AI and technology, and especially effects and how that produces experiences in the human body, but also how it produces understandings of non-human bodies. And Jill’s work that she’s doing, and I’m gonna talk a little bit about medical technologies and the knowledge of the body. So my stuff is really sort of in philosophy of knowledge, philosophy of science, plus we have medical knowledge. I work interdisciplinarily, so the stuff that I’m going to be presenting here has come out of groups that some of them in particular, has been connections of maybe 5 or 10 people working together from history, anthropology, sociology, gender studies, which in itself is very interdisciplinary, and talking about ways that we communicate and produce knowledge together, which isn’t always easy, even though I think from the outside we look all the same type of people, when we start conversing we realize we have very different understandings about what knowledge is, and how it should be produced, and how it should be explained.

So just to give you an idea of our working practice, I try to say, “what we need to work on is conversations, and more conversation, and more conversation, always together, always listening”. Where does that happen? It can happen at functions. It can happen at this lovely Swedish thing called Finka, twice a day we meet, have a cup of coffee, we try to eat something yummy, and we sit down for half an hour and we end up talking about our children day care experiences or our dog, but we also try to build an understanding of where we are as people, and where our research might be going. And it’s just like a working practice that our Union regulates, it says you have to have, but it works really well to build collaborative working environments. So, I try to really emphasize the importance of these non-working, working environments.

That’s not to say we don’t do other things. We have seminars, we have workshops, we try to do co-writing projects that tend to be frustrating, and I so respect the many of you who work on these articles where you co-author together. For us who generally don’t, we find the co-authorship extremely tense, and tension filled, and also extremely productive and generative, so it’s one of these practices that we try to adapt from what we see.

We co-supervise graduate students, master students, particularly graduate students, PhD students. Also, here, very challenging, but very rewarding if we can continue to make it work. And then we have lots of moments where we articulate what we’re thinking, and then we have lots of moments where we’re silent about what we’re thinking. And generosity. It’s easier written than done, but we try.

So today, I’m going to use some of the work that my team and I have produced throughout the years, and talk about the way technologies make sex visible, make gender visible, and make the way that our social norms in very specific contextual contingencies and areas, those norms become apparent when we look at them through technology. I’m also going to talk a little bit about how medical technologies reproduce norms around sex and gender, and then try to open the black box of the social that we call gender, and discuss how that impacts sometimes we call sex, or the biology of the body. Probably looks different to you, the way that we define these two terms.

I’ll start with treatment guidelines. And pharmaceuticals, which is an easy place to look for gender and sex, we had a really great project a while back on HPV vaccines, and the way that it was integrated in Sweden, and it became part of our vaccination program quite early, but only for girls. And then I had some graduate students who were looking at it in England, in Columbia, and Austria, Australia also has that for boys as well. And we tried to look at the way that HPV vaccine was reproducing understandings of gender, and what it was vaccinating. Yes, cervical cancer, or genital cancer, or producing understandings of the disease, but also producing or reproducing politicians’ understandings of what types of sexuality were going to be occurring in the population and at what ages, and within which sub-populations. But I’m not going to talk about that, you can read it, I’ll give you a reference later.

The second thing I’m going to talk about is Swedish Viagra. And this is old news now, so I can talk about it openly, but when Viagra came to Sweden in 1998, when it came to the world, Sweden then, and now, had a healthcare policy that included complete subsidisation on pharmaceuticals. So, if your doctor prescribed you a drug, it would not cost you anything to have that drug. But then, Viagra arrived, other things arrived at the same time, but it caused a sincere sense of worry in our policy makers, that Viagra was going to drain the costs from our pharmaceutical subsidy, and we would not be able to pay for anything else, because we would be paying for erections for all of the men. And it sounds funny now, but it was really a big concern. So when Viagra arrived, it was initially subsidised and then quite soon said “no, we’re not going to pay for this” and this created a huge law suit, of course, and then a series of law suits that took almost 10 years to finish and address and come to a decision on. And the whole thing back and forth was full of rife and conflicts about who was going to be getting Viagra, and for whom would it be legitimate to pay for. And part of this was based on the idea that we have, in Sweden, we regulate our health care provision through laws, that among other things, which says that we should uphold the solidarity principal. If somebody needs medical care, we should provide that medical care for that person. But then you have to define what that medical care is. And through a series of court cases, it became clear that the medical community and the policy making community in Sweden, both agreed that we should subsidize pharma care for men who experience severe erectile dysfunction. And severe erectile dysfunction is often times connected to diabetes, or multiple sclerosis, other severe medical problems as well. However, the bureaucrats came to the decision that it would not be legitimate to use our tax-payer money to subsidize pharmaceutical erectile dysfunction solutions for men who have mild erectile dysfunction. And then it became a decision of how can we provide the medical care for subsidized for severe cases, but not for the mild cases, and where can we make that decision, and who can we trust to make that decision. And the end result was that the decision-making bodies said we will not trust the doctors to make this decision, because we think that doctors will encounter a patient in a one-to-one basis and the patient will try very hard to argue and will have learned the words necessary to argue successfully, that they have severe erectile dysfunction. And the doctor will not be able to withstand that pressure and will end up prescribing Viagra subsidized to patients who really just have mild erectile dysfunction, and so it will be a misuse of our subsidization money. And there was a huge debate about how to stop this from happening, the bracket creep that they called it, and finally they said “well we can’t trust the doctors” of course doctor’s voice in this discussion was like “well this is what we’re trained to do, we are experts at this”, but the bureaucrats said “no we can’t trust you to do that. However, we have already made a decision to subsidize the erectile dysfunction delivered in two different ways. One that you stick into your urethra that you then dissolve and produces an erection, and one that the patient would give himself by giving himself a shot into the penis area, and it would produce an erection”. And so, this was a medical solution to severe erectile dysfunction, also to mild erectile dysfunction, but the bureaucrats decided that it was acceptable to believe that patients would not have that way subsidized if they only had mild erectile dysfunction, and that they would maybe pay for it out of their own pockets in that case. And so, they said “we will subsidize these two products, but we won’t subsidize Viagra, because we are providing a solution, and fulfilling the solidarity principal by providing it differently. Which to me, as an STS researcher was like “oh! Were we’re relying on technology to do the diagnostic practices.” This is where I thought it was really interesting. But it also meant that it was a very clear example about how treatment policies were reproducing understandings of masculinity, understandings of what masculinity needed to do to reproduce itself, but also reproducing understandings of very specific masculinities that were adjusted by a trajectory of ability, or disability, or of disease, also by a trajectory of class, or at least economic positionality, that the masculinity was being addressed in framed by these diagnostic treatment policies, were very complex and specific. So, the masculinities were being perceived but also being reproduced, and they were very specifically reproduced in practice.

Now I’m going to talk about diagnostic practices. And I’m going to do that with some material from a more recent study that I’ve done with a bunch of different researchers across state. Of course when I was working on Viagra a couple of years ago, I started realizing that Viagra was being subscribed to men who had prostate issues, and I started to wonder what these prostate issues were, cause it wasn’t always just prostate cancer, or lack of prostate after prostate cancer treatment. There were many other prostate issues that were being addressed. And as I read more about these prostate issues, I became less and less clear on what they were, and I was more and more confused, and I had this feeling that maybe I wasn’t the only person that had these questions about what these prostate issues were. And I would come across medical literature that would use phrases like “the patient presented with this and this and this, it’s possible that it’s the prostate that’s haunting him” and I was like “oh my god, as a medical sociologist, when I come across the phrase that says ‘the prostate is haunting the patient’ I became very enthusiastic about the phrase’ and so I grabbed it and I wanted to more. So, I ended up getting together a group, and doing lots of research, and I realized I wasn’t the only one who doesn’t know the prostate is always. I did some interviews up at the Swedish Men’s Sexual Health Clinic, and realized that they encountered many patients too who come to them, often younger patients in their 20’s, really concerned that they had prostate cancer, cause they had some sort of feeling down there, and didn’t quite know exactly even where the prostate was, or what it could be causing, the prostate cancer idea ghost haunts our zeitgeist a lot right now, and so we put together a film with this, like an information film that clinicians use in their clinical practice, explaining what the prostate was, and among other things, suggesting that there are other things that occur with the prostate that maybe make it inflamed, or problematic and it’s not always cancer, it can sometimes be an inflammation of the prostate.

And this brought us to a term, in English and Swedish, prostatitis, that I looked at more, and it was this term that I heard a lot of patients that I had been interviewing, I did a bunch of interviews with- I don’t want to call them patients, but those who have experienced problems that they thought was associated with the prostate. And a lot of them would say “Oh, I’ve got this diagnosis from my doctor, it was prostatitis, I was put on antibiotics, it didn’t really help, I’ve been sleeping with a heat cushion, that kind of worked a little” and then about six months later “Yeah, it kind of disappeared”.

And I look at prostatitis, and there are four different types, one is chronic bacterial prostatitis, and that one you can often take care of with some antibiotics. Sweden is really restrictive in its antibiotic use, so you have to really try hard to get antibiotics, but a lot of people have managed to get antibiotics and it helps. If you look statistically, it’s around 15% of the cases, according to the medical literature, that can be helped by antibiotics. But then there is this third group, which seems to be the largest one, which is chronic prostatitis, chronic pelvic pain syndrome. The last type is a new term that sort of appeared, and I was talking to some people about that. I was talking to neurologists, to medical doctors, and people at the health clinic, and finally I was told “Oh you should go talk to this lady over at caroline skemp”, and she was working as a urotherapist, which is traditionally Scandinavian field, it’s often people who were trained as nurses and then they will go on and do a speciality type in neurology-type stuff and become a urotherapists, and work with people who have urinary issues. But this woman had trained initially as a physiotherapy, working with muscles in the body. Then she decided she was going to do urotherapy. She was working unusually with, and on the same corridor as the urology department. Usually urotherapists will get patients referred to them quite often from gynecology, from OBGYN, but she was getting some men, and she was getting men with this prostatitis diagnosis. And she was looking at them, and she was speaking with them, and they had already come to her after having had antibiotics, so it had already been determined that they weren’t reacting to a bacterial infection.

And she would talk a lot about their pelvic surfaces. And she would do a lot of pelvic floor muscle massages, pelvic floor muscle examinations, and pelvic floor muscle exercises for them. And this is really rare in Sweden, I suspect it’s quite rare in Canada as well, but I don’t know. But to have somebody who is trained in your muscles, and then working on your pelvic area, and who is connected to a urology department. So, she was getting a very small subset of our prostatitis patients. And having quite successful treatments of them.

But most of the people that I talked to with their prostate issues would have gone first to their general practitioner, then received a referral to their specialist who would be a urologist, and then urology would take care of that. And urology looks at the prostate, not at pelvic floor muscles. And urology diagnoses prostatitis, it doesn’t diagnose a type of pelvic floor muscle issue. And to me, this was a very clear example of how gender, within a binary gendered practices of medical care, that would send my body to a gynecologist, John’s body to a urologist, give us very specified sex diseases, when maybe our issues are not necessarily related to our binary sexes.

And I wanted to use this as an example of how this structure, which has historical trajectories, which has future trajectories, can really produce sexed bodies for bodies that come to them through a gendered practice of seeing that as a binary body, rather than a general body.

So finally, and I just want to give an example of how our binary understandings of gender, which are culturally dependent, and historically contingent, also produce anatomical knowledge about our bodies. So, this is like maybe even one step even forward on that.

I had a study for a while that looked at a gynecological simulator, and I know a lot of you have worked in an areas close to gynecology, in one way or another, so I don’t need to tell you that learning the bi-manual pelvic exam is pretty difficult, and teaching the bi-manual pelvic exam is also pretty difficult. And for the 15 bodies in this room that have never had a bi-manual pelvic exam, just very briefly, it generally starts out with the patient in the gynecology chair, and the gynecologist, or the doctor, coming in and inserting two fingers into the vagina to feel first the cervix, to feel if it feels firm and healthy, then lifting the uterus up and from above, pressing downwards, feeling the top of the uterus, feeling if there are any cists or anything growing around it, then shifting the fingers over and trying to squeeze the ovaries between the hands, to feel if there’s anything growing on there, and then coming out. And it’s hard to know if the person that you’re teaching this to has actually felt what they’re supposed to feel, it’s hard to know as you’re doing it, if you’ve felt what you’re supposed to feel.

So, embarrassingly long ago now, almost 20 years ago, a simulator was developed to help with that, and also to lift the embarrassment of having to do it on a patient, or on your first time. And the simulator looks like this but you can take off the skin, and you can see how the internal organs are here, and there are little sensors, pressure sensors on the ovaries, on the uterus, on the top of the uterus, and these then send messages up to the computer to register up here in green, yellow, red, if you’ve touched the right places and how hard.

So, I was working with some gynecologists, and they had imported one of these simulators that had been produced I n the U.S, tested in the U.S, validated in the U.S, and was being used in the U.S to actually do medical exams on, so it was in practice. They bring it over, open it up, set it up. In the box there was also one of those little American blue blankets, that are used for medical exams, they put that away because we don’t use the blue blankets in Sweden. They set it up, they started to do the exam, and they said, “I can’t do the exam on the simulator, it’s not working, what’s wrong?”. And they called me in, as a postdoc, and I was like “I will find that answer for you”.

So, I went out, did a bunch of interviews, talked with the person who designed it, talked with the woman who had actually constructed the physical material of it, she was in the UK, came back to Sweden, watched them try to use it, and then watched them try to do the exam. They were teaching it at the time on professional patients at the hospital, so I was able to be allowed into the teaching room and watch them do the exam on the patients, watched what in essence was the patients teaching the exam to the students, which was a really valuable thing to see. And realized that the simple answer to why it doesn’t work was because all of these little wires, which were being attached to the back of the uterus, and then out through this hole to the computer. But the doctors that I was working with in Sweden, were doing this standard international bi-manual exam, by going in and at the final stage, actually trying to flip back the uterus and then press down even more, and feel the backside of the uterus, from above, to see if there was anything growing over there, which they don’t do in the U.S, which is not one of the more pleasant parts of the exam in Sweden, but which we put up with. But also, required a different type of interaction between the patient and the doctor, and a different type of comfort with our bodies. And then, if we want to get all philosophical about it, that the uterus as it was known in medical practices in Sweden, is a different uterus than the uterus that is known in examination practices in America. And if we then are going to reproduce the uterus in a simulator, that uterus is going to be on thing in America, i.e. a uterus that doesn’t need to flip back, and it’s not going to be the uterus we have in Sweden.

So, our actual anatomical knowledge of what a uterus is, is not knowledge about an ontological discrete object in the body, that we can somehow find out what it is, but rather knowledge about a part of a body that is manipulated through very specific contextually dependent examination practices, and that’s what we’re simulating when we simulated in a simulator, or when we draw it in anatomy books.

So, what I’m trying to, with this study, is that even our anatomical knowledge is a direct result of how we know the body, and how we know the body is a direct result of among other things, gendered-practices of the body, and our feelings of shame or comfort.

So, I would just like to say that that’s three examples of how social knowledge, including both the social values and norms that we have about gender, can become biomedical knowledge at the point of treatment, at the point of diagnosis, and at the point of anatomy, because how we know is what we know, and how we know is really dependent on what social values we have.

Supporting Organizations

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