A conversation with the Executive Director of the Boston Women’s Health Book Collective.

Question: What is “Our Bodies, Ourselves,” and how has it evolved over time? 

Judy Norsigian: It began out of a workshop held at one of the early women’s liberation conferences. This one at Emanuel College in Boston and a group of women meeting at a workshop entitled Women and Their Bodies decided to continue to meet. They had been talking about hot topics around sexuality and healthcare and of course you have to understand that several decades ago we had no information at the lay language level for women about women’s healthcare, very minimal information about sexuality. We were in the dark ages and these were college educated women who met at this women’s liberation conference kind of astounded they could be so ignorant about basic bodily functions and out the continued meetings grew this group that became known as the Boston Women’s Health Book Collective. 

Originally there was no intention to write a book. It was a gathering of women in their homes and community centers. They began community courses, know your body kind of courses, and they developed these mimeograph papers that they produced and shared with one another and kept chiming in every time they prepared something on a topic. They went to Countway Medical Library at Harvard Medical School. They talked to a few of the physicians and more nurses who were willing to share information and the end result was this melding of not just the information one might get from a medical textbook, but the real lived experiences of women who listened to this information and they rewrote these term papers. There is no better term for it and they included the experiences of women who chimed in and said, “Well you know this happened to me.” “That happened to me.” And they dealt with everything from the experience of postpartum depression, which of course didn’t even have a language for it then. They were dealing with the fact that some of them have had illegal abortions and what that was like, that they couldn’t get contraception that they had childbirth experiences that were really quite traumatic and did they have to be that way and it didn’t matter what the experience was or what the topic was. What they realized is that they needed to share their stories, share their knowledge as women and then take that to other women to expand the discourse and of course the mimeoed papers became this little newsprint booklet that the New England Free Press put out in late 1970. 

The title “Our Bodies, Ourselves” actually did not come into being until early 1971 and we are about to be introducing the ninth edition of the book in late 2011 during the 40th anniversary year and we’ve seen the book undergo many changes, take on new topics and of course we have a great deal of advocacy and educational work we do in addition to this book and our related books that we’ve produced over the years. But we see ourselves very much as part of the women’s health movement that grew out of a second wave of feminism, late 60s, early 70s and we have been a pillar I would say in that movement and the movement has certainly grown globally. Our connections are with women across the globe and one of the ways that it manifests itself today is in our translation adaptation program. We call it our OBOS Global Initiative and we are actively working with about ten groups in other countries producing their own translations and adaptations of material in “Our Bodies, Ourselves.” Sometimes it’s booklets. Sometimes it’s a whole book and sometimes it’s simply posters on a canoe transport system somewhere in Nigeria. It really varies in terms of how the women take this content and adapt it for their own use. 

Question: How was it different to be a woman 40 years ago? 

Judy Norsigian: Well back then about 40 years ago there was very little information in lay language and we had to turn to largely healthcare providers and mostly our doctors to try to get information and there was tremendous sexism, paternalism and condescension within medicine, so it wasn’t a great place to turn to get questions answered. It was always considered inappropriate. You were speaking out of turn. So we had to educate ourselves. That was number one, but number two there was also a great deal that was done in the field of women’s health and medical care that wasn’t evidence-based as we’d call it today. It was simply because that is what physicians did. They thought it was the right thing to do. There was no evidence basis for it, so we had lots of unnecessary hysterectomies, unnecessary cesarean sections, although the problem is much worse now and we had over use of certain prescription drugs like mood altering drugs. In those days we had Valium and Librium, things like that that were misused, that were not understood to be addictive, that women didn’t have good data on, so that women couldn’t make good decisions about whether or not to undergo the surgical procedure, take this drug or follow this treatment that was recommended by one’s physician, so we were in this vacuum and we were among the first calling for more research on women’s health issues of course, but we realized that we often were the best experts on our own bodies and that we needed to understand better how our bodies functioned and what we were going through at any given point. 

So back then there was a knowledge gap. There was also a dearth of information and there was also this need to really learn to be assertive, learn to speak up because it was the early days of the women’s movement and many women were socialized to be demur, to not speak up, to not rattle the cage, totally inappropriate when it comes to getting good health and medical care, so we needed to change the socialization of women. That was a big, tall order. Over the years however, as we grew and as we produced more editions of our book we recognized the need not just to demystify health and medical care and to understand certain things, but to move onto get a closer alliance with public health and that is when we really started to work with epidemiologists and to understand better that it isn’t really through medicine that we achieve good health and well being. It’s often through improved measures in public health and it’s really the food we eat, the air we breathe, the water we drink and also the level of violence in our streets in our immediate community that ultimately have the greatest impact on our health. 

And of course poverty, if you want to look at determinates of good health and well being poverty is the single most important determinate, so if we could work on poverty reduction we would probably do the most to improve women’s health and well being. So all these issues kept percolating up. We were working on the environment, working on workplace safety issues, working on simply demedicalizing many aspects of women’s health that had become more and more medicalized over time. Why were we doing so many hysterectomies? Why was the cesarean section rate skyrocketing? And all of these interventions going apace without improvements in outcomes and that is really the telling story and then along the way we started tracking something that is probably one of the most important elements in health and medicine today and that is the increasing and inappropriate influence of the pharmaceutical industry over physician prescribing practices and physician behavior and also the public’s belief in drugs and the first and only solutions sometime to a host of medical problems and issues that come up. In fact, we have something called disease mongering today, a term used to connote how the drug industry creates conditions for which it will then market products and these are not necessarily conditions that are true medical issues or diseases. They’re simply orchestrated and artificially created conditions for which we now believe we need medical and drug solutions. 

Question: What are the most pressing health issues for women in the developed world? 

Judy Norsigian: Well in industrialized countries there is no question that the encroachment of the pharmaceutical industry and its marketing practices has deleteriously affected the kind of medical care we get and the decisions that consumers are making. Many countries don’t allow something we call DTC or direct to consumer advertising. The United States does and what has happened is that the pharmaceutical industry can directly market its products to consumers. 

Until late 1990s the pharmaceutical industry could only market prescription drugs to healthcare workers, to physicians and then there was a relaxing of those rules and they could market their product directly to consumers creating this clamor for the latest brand name product, which might not even necessarily be better or safer than the existing product on the market. 

What we see too is that because R&D is so expensive there are a whole bunch of me too drugs and that the pharmaceutical industry is largely engaged in producing drugs that will come on the market to deal with the fact that something is off patent. It’s going to be cheap because it will be generic, so we need something new and different. Maybe minisculely different from a previous drug and I think the story of Prilosec and Nexium is probably one of the best stories you can tell about a product that comes on the market really not any markedly different from the first product, but that can be sold at ten times the cost of the first product, sometimes more. Then you’ve got the issue of whether or not you control pharmaceutical pricing. That is a huge problem in terms of access to medicines that we do need access to and in many countries there are government controls over pharmaceutical pricing, but in the United States the drug industry’s lobby has been so powerful that we don’t see those same controls over drug company pricing. We’ve had some efforts. The VA Administration of course is one place where we’re able to see some measure of control over the pricing of drugs and the VA system actually is one of the best systems that functions in our country today. 

Question: How can women decipher the drug information they're getting? 

Judy Norsigian: All of our materials emphasize for women the fact that commercial interests are producing much of the written material, the electronic material, the TV shows that they see now, that they can’t assume that they’re getting unbiased, uncompromised information, that conflicts of interest exist everywhere. So we say learn the source of your information. Is it a drug company producing the material? Sometimes it’s actually not bad information, but very often it is all about minimizing the harms, the risks and maximizing the benefits and exaggerating the benefits, so you have to look deeper beyond the sort of 20 second bullet points you see. Even physicians are inappropriately influenced by pharmaceutical advertising and educational programming, so you can’t always depend on your physician. One excellent example is the overuse of statin drugs in women for primary prevention of heart attacks, things like that that for secondary prevention we have very good studies that show benefit for women, but not for primary prevention, so now women who simply have an elevated cholesterol level, no other problems are told to go on statin drugs when in fact in many cases they stand to be hurt more than helped. Getting at the kind of data that evidence based folks have produced, those without conflicts of interest, these are physicians and researchers whom we try to work closely with, getting at that information is often hard because it doesn’t make it onto television. It is certainly in the medical literature, but there is no PR company getting that out to you, the public, so we are a voice for those sources of uncompromised information. We make sure it is in lay language and we get it out at our website, through our blog. We have a very popular blog, Our Bodies, Our Blog that many women read every day and we send our readers and our listeners to these other sources of more dependable information where there aren’t conflicts of interest and that is something every single woman has to think about and be concerned about is where is the conflict of interest here, am I getting information that is truly not tainted by commercial interest. 

Another excellent example of where we saw this was in the recent new mammography guidelines produced by the US Preventive Services Taskforce. These are excellent guidelines. Those who have a lot to lose if women under 50 don’t get routine mammograms or if women over 50 do it maybe a little less frequently based upon their profile they have a lot to lose. Those are the ones critiquing this, not the evidence based folks. Those without conflicts of interest and there are many of them out there, have reviewed what the Preventive Services Taskforce has produced and certainly our experts, those for the National Women’s Health Network and several other wonderful organizations have to bat and said, “These are excellent guidelines.” “We should be following them.” It’s not about denying women care. And by the way, everyone should understand that mammography is a relatively weak tool for screening. We need better tools in the area of breast cancer. It’s not like pap tests where we have an excellent screening tool for cervical cancer. We’re not doing so well in the area of breast cancer, so there is an area where you would have seen the American Cancer Society. You would have seen some prominent folks in breast cancer treatment and people who have interests, in some cases in the equipment, the mammography equipment that is being sold. They have financial interest in it, so of course they don’t want to see the business go down. These are things the public doesn’t see very easily. 

Question: How can women figure out what medical information to trust? 

Judy Norsigian: Well we do live in a culture that does beams out the message more is usually better, the high-tech solution is the best solution. What we don’t often do is watch and wait, particularly with drugs post marketing to see that once something becomes in more widespread use then you begin to see the downside. You see low-level negative effects. Now if you’re somebody who has got cancer and you need a chemotherapy drug you know there are some downsides to chemotherapy drugs, but you’ve got a really clear benefit that you’re hoping for. In fact, some studies show efficacy for some of these drugs that is very impressive. If you’re somebody who has a condition for which the solution is not necessarily proven to be that efficacious, which probably has more of a downside than you can see particularly if it is a new solution, a new drug or a new treatment it’s usually better to watch and wait. There are many parents for example who looked at the fact that the HPV vaccine was largely studied in older women, 15, 16 to 25 yet it is being marketed for the 9 to 12 year-old girls out there because of course it is not effective if you get to a young women after she has been sexually active, so there is reason for this targeting of very young girls, but there are parents who have said, “You know there is only a few hundred women in those… a few hundred girls in those clinical trials.” “I’m going to watch and wait because I don’t want my daughter to be a guinea pig.” And in fact, that is what it is if you’re dealing with a product, a vaccine or anything else where in the large clinical trials your particular group you’re looking at and these are 9 to 12 year-old girls, weren’t representative in the sample in those studies and that is the kind of thing that we encourage our constituencies to listen for, to look for. Where is the evidence? Does it really have to be taken, this drug, this procedure? Does it have to be done now? Can you watch and wait? 

And we also want to caution women about elective procedures. So many women are jumping on the cosmetic surgery bandwagon. There is a lot of promotion for the latest form of surgery. It has even gotten to the point of labiaplasties and vaginal rejuvenation and ridiculous approaches that in fact maim some women that have really questionable benefits and cost a lot of money. These are things you have to pay out of pocket for because medical insurance of course won’t cover elective cosmetic surgery. And women are being duped into thinking their lives will be made better. Women think if they get augmentation, breast augmentation and they get the latest silicone gel breast implants suddenly their lives will be a whole lot better. They might feel better about how that part of their body looks if they aren’t one of the women who have a problem post surgery, but the studies show that overall you’re not happier with your life just because you do breast augmentation. The things about your life, how your personal life goes, how your job is going, your relationship with your friends, those things don’t change because you get breast augmentation even though you think they might and it’s that kind of social science research we want women to recognize and we want their partners to recognize too. I met a boyfriend at a college campus who pleaded with his girlfriend not to get breast augmentation. He said she was perfectly fine. He had done some research on the Internet beyond the ads at the plastic surgeon websites and he could see these were some significant risks and he didn’t want his girlfriend taking them and her response to him when he pleaded with her not to undergo breast augmentation was, “You know everybody in my sorority is doing it, so I’ve got to do it too.” And he said to me, he said that is when I realized that a boyfriend’s opinion only goes so far. It’s the culture that is teaching women messages about their bodies and it is the culture that is encouraging what he believed were risky practices. 

Question: What is most damaging to women in our culture? 

Judy Norsigian: Well I think the omnipresence of the media and the nature of the media it’s gotten more violent, more sexually violent. Access to pretty violent pornography is readily available to very young children, boys and girls and parents who think their kids don’t have access to the material are sorely misled. There are parents now learning to ask their children not to eliminate the cache. They go in and look at what their kids are looking at sometimes because they’re learning some amazing things. The fact is that we will not be able to offset this incredible impact of mass media, except insofar as we talk about these issues. We bring the conversation to the dinner table. We watch some of these things with our kids, that we ask our kids to become better deconstructors of media. There are so many misogynistic messages that lead even young women to think about themselves in pejorative ways that it is scary to me as someone who didn’t grow up with all this around me. I was more protected from it. I think the worst I could do was go into my uncle’s closet and find his stash of Playboy magazines and flip through them, but I didn’t see the kind of really violent pornography that is out there in steady fair, especially for young men who then expect certain things of young women they become involved with. They consider this normal and routine and I know some filmmakers are taking this on. 

I will say that one of the roots to educating young people about all of the misinformation and sometimes the strange ideologies that become embedded in our brains without our realizing it is to really follow the talented young documentarians who are trying to get at some of these problems. They are getting at the food supply. They’re getting at pornography. They’re getting at sexuality. They’re getting all manner of the issues that I consider social problems now, but they’re doing it with good humor. They’re doing it through interviews, through personal storytelling. They’re really finding a way to grab the attention of young people who are bombarded with messages from everywhere. It’s everything from texting and apps and you know for your phones and you know that your favorite programs, which of course you can see at any time of day through TiVo or on the internet. You can literally be saturated with media that may or may not be inclusive of correct information, accurate information. Just take tobacco and women for example. There are so many attractive characters in movies and television shows who are smoking all the time. Ten, fifteen years ago that wasn’t the case, so though we know a lot about tobacco use and certainly you know some women certainly know that lung cancer is the leading cause of cancer mortality in women. It’s not breast cancer or something else. Nonetheless we see rates of smoking rising among young women, older teens, women in their early 20s even when they’re better educated. It used to be a socioeconomically linked problem. Now I think something has happened with the media and its impact on very smart young women that you see more of them smoking. It’s also tied in with the obsession with thinness in this culture. A little weight on your body is a good thing. The important thing is to eat well, to get some exercise, you know to feel good and where your body lands in terms of weight is where it probably ought to be, but the obsession with body weight, with thinness, with the hourglass figure has led to a kind of starvation approach to eating for many women and a kind of obsession with food and body type that makes it impossible for young women to have healthy lifestyles and that is part of what we’re up against is we have go media selling all kinds of starvation diets, ideas, all kinds of ideas about body image that really run against the grain of what is healthy and we need sane voices wherever they can be found, on the internet occasionally, in a community setting who will say stop, wait. 

Our favorite advice to young girls is don’t buy the standard glossy magazines filled with ads and articles that will lead you to self loathing. They will lead you to body hating. Instead don’t read them. Throw them away. If you’re young get magazines like Teen Voices, magazines that are explicitly about rejecting these mainstream media messages that lead us to be totally dissatisfied with who and what we are, that lead us to be primarily consumers of products and procedures rather than contributive to our community, to society. You know people with brains and ideas and people who can make great contributions to making this world a better place. If we’re spending all our time dieting and buying every single product under the sun and analyzing all these ads in the magazines that we read we don’t have time to join the community efforts that make this world a better place. 

Question: Can women enjoy fashion and glamour responsibly? 

Judy Norsigian: There is no question that its innate among human beings to want to adorn our bodies, to want to wear interesting clothes, to pierce our bodies, to do all kinds of things that make us look interesting, different, to make a signature statement. There is nothing wrong with that unless we start doing things that really pose significant harm to our health and then we should be doing it only with our eyes open and that is where for example with fashion. I know some teenagers who decided to put on their own fashion show and they designed their own clothes, but they weren’t proposing that women get up in very high heels, which are really bad for your feet number one. They weren’t proposing that women wear constrictive clothing that makes it really hard to move around or clothing that they didn’t feel good in. They chose clothing they felt really good in and they chose clothing that would be reasonable in terms of what somebody could produce. It wouldn’t be so totally expensive that only rich people could afford it. I mean that is part of the problem is that we’ve created a culture where everybody is supposed to aspire to or emulate the most expensive thing on the market or what the very rich folks are doing rather than what really would be fun for us and it might not be what rich folks are doing. It might be what we think looks good, feels good and the same goes for food. We can bring locally grown vegetables that taste great even to the inner city and we’re doing that with projects that prove you can get really good food, tasty food and you don’t have to buy plastic food filled with chemicals that are actually known to harm our health. 

Question: What is the number one issue that needs to be addressed today when it comes to reproductive health? 

Judy Norsigian: In the industrialized world we have a number of problems when it comes to reproductive health and I have to say we have to distinguish the United States from other countries because other countries are not as schizophrenic about say, the subject of abortion. Most industrialized countries have relatively reasonable access to abortion. It is an incredibly important part of reproductive healthcare. It’s not the only service, but there are some women who need access to abortion for a variety of reasons and that really ought to be available and it should be covered by any health plan. We have a huge problem there, which I won’t get into right now. We also have to make sure that women have better access to contraceptives even if they can’t afford some of the more expensive ones and they have access to good information and that we do a better job educating the public about the need for what we call dual protection, protection against unwanted pregnancy if that is what we want and protection against sexually transmissible infections, not just HIV AIDS, but a host of other things, Chlamydia infections, certainly want to prevent HPV infections and those are things we really need to do a better job on. 

When it comes to maternity care we’ve actually slid backwards. In the United States it looks like our maternal mortality rate is starting to climb and certainly in some states we’ve demonstrated that. And the reasons are multi factorial, but the most important thing I want to underscore here is that this is an example where our high-tech inappropriately interventive approach has produced a downside. We’re doing way too many cesareans. It’s about one in three nationally, but we have many states and many communities where it is now 40, 50% cesarean section rate. I know in New Jersey there are hospitals that have 50 to 70% cesarean rates. This is unacceptable and of course it’s going to produce harm because cesarean section is a major abdominal surgery. Even if the surgery goes well you have all kinds of infections that occur in hospital settings. And we have an increase in MRSA, methicillin-resistant Staphylococcus aureus. MRSA infections are not often easily treatable with antibiotics and in fact some of our big guns like vancomycin aren’t doing such a good job and you need IV, intravenous antibiotics and long stays in hospitals sometimes to recover. 

This can happen after a cesarean just like after any surgery. These are kinds of things women don’t appreciate, so we’re trying to educate women to think about what are best practices in maternity care. The best way to avoid an unnecessary cesarean section is to choose a midwife, whether it is a freestanding birth center or in a hospital setting where midwives can really practice midwifery or a homebirth setting and we’ve got good data that homebirths for low risk, uncomplicated pregnancies are as safe as hospital births. That data have been in for several years now and it’s really a turf problem that we’ve got where we see obstetricians scaring women into think this is risky tantamount to child abuse, ridiculous things when women suggest that it might be reasonable to have a homebirth or a freestanding birth center birth. These are actually wiser approaches and we have been involved in producing a 14 minute DVD largely designed for Massachusetts legislators who are considering a midwifery bill right now, but it is something we hope to have on YouTube soon so that the larger public can understand from the perspective of consumers and doctors. We have no midwives speaking in this DVD. It’s only physician couples who have used midwives and other couples who are very well-educated and physicians who understand the benefits of midwifery care speaking about the benefits of the midwifery model and it’s that kind of DVD or video that we want more of the public to see so they understand that what they’re getting from mainstream sources of information is not necessarily the best thing when it comes to how to go about having a baby in this country today. 

Question: Does the recent Lancet study threaten commitments to women’s health? 

Judy Norsigian: I was speaking at a conference of reproductive health providers just yesterday where we talked about the front page article in the New York Times describing the Lancet study, which gave us our first really good news that all the things we’ve been doing, many different interventions are finally having an impact on reducing maternal mortality in developing country settings. Now about 40 to 50% of the maternal mortality is created in 6 countries and one of them is India, which of course has nearly a billion people. They’ve done a really good job in recent decades in lowering the maternal mortality rate, so they have a big impact on the overall figure for maternal mortality worldwide. It’s a great thing the Lancet article came out. None of us at this meeting thought it would harm the investment and reduction of maternal mortality. In fact, finally we’ve got evidence that things we’ve been doing are being successful so that we should be pouring in more resource, investing more money in these approaches to reducing maternal mortality. It’s not about reducing our commitment. Now that we’ve shown this works we’re going to increase our commitment. And there are also some interesting things about this study we should not forget and that is that in places like Eastern and Sub Saharan Africa a big killer of pregnant women is HIV AIDS and so the solution is not getting women immediate obstetrical emergency coverage. It’s about getting antiretroviral to pregnant women because 60,000 deaths in that region were caused by HIV AIDS related problems. It wasn’t because a woman was in labor had obstructed labor, was hemorrhaging, had an infection and couldn’t get appropriate medical care. It was really the HIV AIDS problem. So it depends on where you are as to how you’re going to intervene in the problem of maternal mortality and pregnant women who are struggling with HIV AIDS have to really get that addressed in some cases first and foremost. 

Question: What about when it comes to the developing world? 

Judy Norsigian: Well in less industrialized countries there is no question that if we don’t support the health of women who are the mothers of children in future generations and very often they do double, triple duty. They’re working in the fields. They are taking care of the home. They are the ones who have to put food on the table. They don’t get access to education. We know now that the single most important thing we can do is make sure that young girls stay in school, that they get an education. That will more than anything else help them improve their own ability to be healthy, their ability to have healthy pregnancies, to be mothers who aren’t stranded with few resources and families they can’t feed. This would be the most important thing we could do and it means overcoming a lot of sexism, a lot of very negative attitudes about women and the need to put women in powerful positions in communities. Women are often not allowed leadership positions in government, community, state, national. These things have to change and when we see change there we see usually a trickledown effect in that women do better. The communities do better. Children do better. Overall health improves. 

Question: What is the most important practical advice you would offer women today? 

Judy Norsigian: We always say that the most important things you can do about health and wellness is to control the things you can and get politically active around the things you can’t, so when it comes to food well, you need a good food supply. If you can’t get locally grown or organic foods and you get mostly what I call crap available in your community to purchase you got to do something about changing that. If you do have access to community-supported agriculture or access to organic food and you can afford it support those sources of good food. The most important thing is fresh fruits and vegetables, whole grains, to minimize the amount of prepared and processed foods you take in. High fructose corn syrup, which is really an awful substance, is in almost everything you buy and prepared, commercially prepared products. We need to avoid high fructose corn syrup as much as possible. We also need to try to avoid certain soy isolated proteins. I won’t get into it right now, but many of the soy products contain this substance. We need to get fermented soy products if we have soy, but really turn to a more varied diet, not think about the latest fad, the latest processed food as the solution, but more whole foods, minimally processed and they’re easy to cook. They’re quick to cook. It’s a myth that cooking is so labor intensive. There are ways to learn how to cook that work. 

Also what about the air we breathe? We may have to do something as a community to do that whether we’ve got an industry nearby polluting the air. It can vary from community to community. What about our water sources? We certainly don’t want water privatized. We certainly want to make sure water is as clean as it can be, but we have to understand that bottled water is not the solution and there are good exposes of that all over the Internet right now. And then finally we have to do something violence in women’s lives. That is critically important to sustaining our health and wellbeing. Well where do you start? You can start in one place. Whatever appeals to you. You can’t do all of these things at once certainly. If you join a group and support a group that is doing something you care about you give them your money. That’s one way, but giving your time, your expertise, going to the local school to speak about some of these issues. Those are other ways that you can educate the community and that you can go about making the health a priority in terms of the environment, so it’s not about new drugs. It’s not about bigger medical centers. It’s about healthier communities and we can all do something in our own small way to make healthier communities a reality.