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A Tribute to Barbara Seaman:
Triggering a revolution in women’s health care
Barbara Seaman was an author who persistently challenged the "givens" of the medical establishment. In the 1970s, she became a pioneer in a bustling new feminist health movement that focused on patient knowledge and decision-making. The New York Times wrote that she had "triggered a revolution, fostering a willingness among women to take issues of health into their own hands."
Barbara Seaman (1935-2008) ©Linda Stein
A graduate of Oberlin College and Columbia University School of Journalism, Seaman wrote for many mainstream publications, including Ladies' Home Journal, Family Circle and Ms. Magazine. Her first book, The Doctors' Case Against the Pill in 1969, questioned harm caused by the estrogen levels in early birth control pills -- 10 times current dosage -- and became the basis for Senate hearings in 1970.
Seaman followed with books, Free and Female, about women's sexuality, and Women and the Crisis In Sex Hormones, which persuaded the federal government to convene a task force on DES, a drug found to cause cancer and other problems in daughters of women who were given it. In 1975, Seaman co-founded the National Women's Health Network (NWHN) in Washington, D.C.
Closed out of magazine writing by upset pharmaceutical advertisers, Seaman persisted. She contributed to a dozen anthologies and consulted on television documentaries; her review of five books on breast cancer appeared in On The Issues Magazine in 1997. All the while, Seaman burnished a reputation as a mentor to upcoming writers.
In 2000, she co-edited For Women Only: Your Guide to Health Empowerment with Gary Null, and in 2003 published The Greatest Experiment Ever Performed on Women: Exploding the Estrogen Myth, reissued in 2009. Two more books, co-authored with Laura Eldridge, entered book stores after her death from lung cancer in 2008 at age 72 -- The No-Nonsense Guide to Menopause in 2008, and in April 2011, The Body Politic, a history of writings on the female body.
Seaman lived in New York City near her three children and four grandchildren. "I didn't start out to be a muckraker," Seaman once said. "My goal was simply to try and give women plain facts that would help them to make their own decisions, so they wouldn't have to rely on authority figures."
Below are funny, irreverent and poignant tributes to Seaman -- feminist, writer and activist. - By The Editors
Cindy Pearson: It’s taken me three years
I wanted to title this story "How the woman who taught doctors how to tell women the truth faced her last battle with medical misinformation and died gracefully in spite of it."
On the last day that I spent with Barbara Seaman before her untimely death, she asked me to work with her on an article. Barbara and I had never collaborated on a writing project, but it was important to her to publish something about her experience trying to get information as a patient with advanced cancer. We talked about what she wanted to say and how we would shape the article. After we talked for awhile, Barbara looked at me and said, “You know you’ll have to do this after I’m gone." I said I was willing to write the article by myself, although, in truth, I felt more than a little intimidated at the prospect of fulfilling Barbara’s mission. It’s taken me three years since that conversation to finally write the article Barbara wanted.
Here it is:
In the mid-1960s Barbara Seaman heard story after story from previously healthy women who’d suffered problems caused by birth control pills. Almost as upsetting to these women as the threat to their health was the refusal of their doctors to take their complaints seriously. At the time, Barbara was a writer and editor at leading women’s magazines.
What Barbara decided to do about those women’s stories sparked a revolution in women’s health. She researched the safety of birth control pills, which were sold in much higher doses at that time than now – dosages at least ten times the current usage. She found out what doctors actually knew about the serious risks of The Pill, and wrote a book,
Within just a few years, the idea became widespread that patients had the right to know the truth about their diagnosis or condition, the options for treatment and the possible downsides.
Of course, even though nearly all patients were routinely denied access to information about their conditions and their treatments, women’s experience with the health care system had the added overlay of sexism. Most of the doctors were men, a reality presented as if only men had what it took to master the intricacies of scientific knowledge, but, in fact, the gender bias in medical schools was enforced by quotas limiting the number of women allowed to enroll.
Cultural expectations about how women “should" behave permeated medical care. Women “should" want pain relief during labor and delivery; women “should" have orgasms during vaginal intercourse; women “should" take hormones after menopause to stay young. Was it any surprise that the meeting of the patients’ right to know movement and the women’s liberation movement resulted in an all-new women’s health movement?
Many grassroots women’s health projects sprang up over the next few years, and by the mid 1970s, the women’s health movement consisted of hundreds of local projects, including clinics, self-help groups, writing groups, education projects, as well as thousands of individuals who considered themselves supporters. By 1975, it was clear to Barbara and her closest allies that the time was right to establish the “action arm" of the women’s health movement – the National Women’s Health Network. Barbara wanted an organization that could make a difference in Washington, D.C., where so many important policy decisions are made.
Thirty-five years later, the National Women’s Health Network is the nation’s leading feminist health advocacy organization, listened to by members of Congress, the Food and Drug Administration (FDA), National Institutes of Health NIH) researchers and the media. Thanks to the Network, the FDA now allows consumers into every meeting where the safety of drugs and devices is being discussed, and the NIH’s research into women’s health issues is guided by the input of women themselves. Progressive physicians, health activists and individual women turn to the National Women’s Health Network as a trusted source of information on women’s health. All of these forces working together, including Barbara’s own continued work as an activist journalist, made important changes in the health care system. Within a decade, quotas limiting the number of women in medical school were abolished, patients’ rights to written information about prescription drugs were established and nurse practitioners became a respected profession, giving many women the experience of a patient-centered encounter with the medical system. Medical education itself changed as young physicians were taught to offer options and participate in shared decision-making with their patients. In many ways, it seemed as if Barbara’s battle to change physicians’ behavior had succeeded.
But 40 years after Barbara first spoke out for patients’ rights, she encountered another enclave of misinformation, paternalism and doctor-knows-best behavior in oncology care. Or at least oncology as its practitioners treated her and many other patients with advanced disease. The sad fact is that advanced cancer can’t be cured. Some types of cancers progress more slowly and patients can live for many years after their diagnosis of advanced disease (think Elizabeth Edwards). And some people are exceptions (think Lance Armstrong. But unlike many types of cancers that can be completely cured when found early, advanced cancer, and especially advanced lung cancer, has no cure.
Barbara found out she had advanced lung cancer in the summer of 2007. She was in her early 70s, a time when many of us, even the most ardent feminists, are enjoying less work and more time to relax. Not Barbara! Although Barbara always made time for family, friends and nurturing younger feminists, she also had contracts for two books that she was co-writing with Laura Eldridge, The No-Nonsense Guide to Menopause and The Body Politic: Dispatches from the Women’s Health Revolution. Barbara had also promised to organize her personal papers and donate them to Radcliffe College, where they would be a prized part of the Women’s Rights Collection. In other words, Barbara had a lot of work that she wanted to get done.
After her diagnosis, Barbara put her work on hold for a little while and started talking to oncologists. Although these physicians (in the end she consulted with five board-certified oncologists practicing in New York City) were pleasant, respectful, caring individuals, the information they provided was almost as backwards, professionalistic and demeaning as what women heard from their gynecologists in the 1960s. Every single oncologist encouraged Barbara to be treated, and told her that the treatments they recommended had a good likelihood of producing a “response." The oncologists differed in the treatments they recommended: one suggested chemo, another said radiation would be better, a third said she should have both chemo and radiation to increase the chance of response, and the next oncologist also said she should do both treatments, but radiation first, then chemo.
A lesser woman would have been lost in the details of these varying recommendations. But Barbara was savvy enough to realize there were some other important things that weren’t being talked about, including the most important thing -- that “response" didn’t mean survival. Almost without exception, these pleasant, caring physicians failed to mention that none of the treatments they were recommending increased the likelihood of surviving. Some of them did mention that the chemotherapy used for her type of cancer caused nerve damage, but all seemed to assume that any side effect, even one disabling to a professional writer, would be worth it.
In the end, Barbara found her way to the truth. She used her own resources as a skilled researcher and turned to friends, including me, who could read the literature and find the relevant studies. Barbara’s truth wasn’t what any of the oncologists told her -- as she put it to me one day when we talked about the studies, “You mean they want me to go through chemo every three weeks for three months to have a chance of extending my life by nine weeks?"
Barbara’s truth was also firmly grounded in knowing what was important to her -- her work, and her time with loved ones. Barbara chose palliative care and with the support of Dr. Diane Meier at Mt. Sinai Medical Center, had seven productive months during which she spent time with her family, organized her personal papers, taped a series of oral interviews, and, oh yes, worked on those books. Barbara’s fingers and mind were as sharp as ever when she and Laura Eldridge sent back the corrected galleys for “Menopause" to Simon & Schuster early the next year.
I saw Barbara the day after the book was completed on what turned out to be the first day of truly declining health. We spent the day talking about her early career, what it had been like to start the National Women’s Health Network, and her hopes for this article. Barbara was at peace with her decision to spend the last months of her life working, but she was really mad that all the experts she consulted tried to give her false hope. “These oncologists need to learn a few lessons from the women’s health movement. I just want them to tell everyone the truth, even if it’s bad news. If we know the truth, we can make the right decisions for ourselves."
Meanwhile, the National Women’s Health Network has been busy making sure that women’s needs are taken into account in the struggle for health care reform, and that the health care we receive is respectful, safe and effective. Barbara may not be able to answer the phone when we are trying to help women calling with questions about new birth control methods, osteoporosis medications or “Viagra for women," but her incisive thinking is never far from our minds.
Laura Eldridge: Work grew out of personal experience
"Never Forget the Big Picture; Always Focus On the Main Event." This piece of advice was one of the first offered to me by Barbara Seaman when we met in 1999. Over the next near-decade, Barbara became my boss, friend, co-author, hero and surrogate parent.
Like so many ardent activists, Barbara’s work grew out of personal experience. When her son Noah was born, Barbara’s doctor put her on a drug that got into her breast milk and nearly killed her son. This happened despite her clear and stated intention to breast feed. Through this experience she became a health writer, and that led to her work on the birth control pill. She also watched her aunt die from a cancer that the doctors determined was caused by the use of hormone pills.
Perhaps because of these different but related experiences, she was always trying to make connections between seemingly disparate, but deeply related issues of consumer advocacy and health. She saw so clearly how the medicalization of women’s bodies that occurred first with pregnancy and then menopause held lessons for what happened with contraception. Today, this message is more important than ever as we face unprecedented numbers of unproven and under-tested drugs promising to preventatively manage so many aspects of the health of people who aren’t sick. As we come to understand the many dangerous relationships between drug companies, doctors and government bodies, the challenge of Barbara’s work is totally compelling and contemporary.
Because she understood that while some of the specific challenges change, the larger battles continue, Barbara believed that a huge part of activism was mentoring and empowering young people. While many wasted time on intergenerational feminist in-fighting, Barbara continually reached out to younger women and worked to give them opportunities to thrive. She frequently gave assistants or interns a chance to co-author important articles or work with her in credited ways on significant projects. She tirelessly promoted the work of young women whom she admired, and worked to connect them with older, more established people in their fields. These women became another family, and all of us who benefited from her generosity are her ideological children.
Merle Hoffman: Questioning the 'hard' in hard data
I went to one of Barbara's readings on the Pill in the early 70s and what stood out for me is how she characterized the male domination of medicine by discussing the notion of "hard and soft" data when looking at statistical reports.
"Why," she questioned, “did we have to speak about 'hard and soft' -- I want to talk about 'wet and dry'!!"
Unfortunately this never got off the ground.
Barbara Ehrenreich: Unstoppable, and, when necessary, disruptive
Let it be remembered that in the eyes of the medical profession, big Pharma and various other establishment players, Barbara Seaman was a real nuisance – noisy, unstoppable, and, and when necessary, downright disruptive.
She discovered me – and vice versa – in about 1972, shortly after Deirdre English and I published a little pamphlet called “Witches Midwives and Nurses: A history of women healers." ... Our pamphlet was a pretty modest undertaking—we had self-published it and distributed it from the home we shared with a few other people. My job was to fulfill orders for our pamphlet – which I did by packing them up in Pampers boxes generated by my infant son.
Somehow, though, we came to Barbara's attention and pretty soon she was promoting us – and “Witches" – all over the place in her usual noisy and stoppable way. See, Barbara loved to promote the work of younger women – not just Deirdre and me, but a group of women in Massachusetts, who had also self-published a little pamphlet, which they called Our Bodies, Ourselves.
We were into self-publishing in those days because we were all much too radical for the publishing industry. Women's health activists were into self-everything then -- even, and this was totally radical, vaginal self-examination, which really shocked the medical profession. One prominent doctor announced that was very dangerous for women to insert speculums into themselves, because the speculums might not be sterile. “Oh," we said: “So everything that goes in there has to be boiled for ten minutes first?"
Barbara was like a fairy godmother to those of us who were becoming women's health activists in the 70s. She promoted us, encouraged us, cajoled us, and – yes – sometimes pushed us a little harder than we wanted to be pushed.
I only once made the mistake of ignoring her. That was in the early 90s when she was warning us all about the potential hazards of Hormone Replacement Therapy. Well, I took it anyway and I did get breast cancer. Sorry, Barbara – you were right.
But, at least Barbara lived to see me become a “survivor" – a survivor, that is, of the pink ribbon breast cancer cult.
Back in the 70s, when Barbara was encouraging so many of us, I don't know whether she thought she was passing the torch. I tend to think she just thought there were enough torches to go around – and an awful lot of darkness to light up!
Now, in the face of so many challenges, I'm trying to channel Barbara Seaman and I think I know what she might say: She would say, “Look, we – in the women's health movement -- didn't get where we are today through the ballot box. Yes, it helped sometimes and we certainly include it among our tools for change. But mainly we got where we are, and advanced women's health in as many ways as we have, by listening to women, exposing the lies, telling the truth and organizing for real change." In the spirit of Barbara, we're going to have to be more of a nuisance than ever!
Judy Norsigian: The complexity of human relationships
Barbara Seaman – dubbed the “first prophet" of the modern U.S. Women's Health Movement by Gloria Steinem – was one of my favorite mentors. A trip to NYC almost always involved a visit with Barbara, and sometimes staying over at her home. When my daughter, Kyra, was very young, I sometimes took her with me to Barbara's home and remember the marvelous “dress-up" sessions and impromptu plays that Barbara and Kyra would act out for my benefit, after I returned back from a meeting or talk. Barbara was committed deeply to the women's movement and also understood how important it was to have plenty of fun along the way. I often thought of Barbara whenever I saw a reference to Emma Goldman's famous quote, “If I can't dance, I don't want to be part of your revolution."
Barbara's creativity and imagination helped foster many a clever campaign to challenge the misleading marketing of hormones. As a co-founder of the National Women's Health Network and a long time journalist, she had plenty of opportunities to inspire other activists to join her in this critical challenge to the drug industry. She read draft sections from various editions of Our Bodies, Ourselves and always offered astute comments and editorial suggestions.
Barbara was friend and teacher to many, and I felt so lucky to know her. Her brazenness was a marked contrast to my own more cautious style, and I saw how her risk-taking was instrumental in moving forward an activist agenda, even as she took personal and professional “hits" that cost her dearly. As she wrote back in 1997: Having reported on estrogen products for more than 30 years, I still lean towards the conservative position -- and as a result, in the 1990s, I have given interviews to scores of magazine writers, only to have my comments removed from the final copy. I have been called by and booked on all three network morning programs, only to be canceled out with some lame excuse.
Along with many of her other friends, I tried to be supportive when I first learned of her struggle with a violent and controlling relationship that caused deep distress over many years. Her own writings and reflections about this painful period offered so much insight and understanding about the complexity of human relationships, how even wise souls cannot avoid the emotional entanglements that can ultimately be so destructive.
I hope that Barbara's books and articles will be read for decades to come. I treasure my own copies of her writings and share them frequently with others. I can visit her no longer in that upper West Side apartment, but I still meet Barbara's wonderful and witty mind every time I open one of her books.
Leora Tanenbaum: She convinced me
In the Fall of 1994, I came across Barbara's name on the press release announcing the publication of Shere Hite's newest book. Shere was in Europe, and Barbara had volunteered to be a U.S.-based contact for the media. Well, I really wanted to write about Shere Hite. So I called the number on the press release, figuring that the conversation would take two minutes.
Instead, Barbara asked me a zillion questions: Who was I? Where had I gone to school? What did I write about? What did I think about hormone replacement? What did I think about the Pill? What did I think about Norplant?
My head was spinning. This was not what I had been expecting from Shere Hite's publicist.
Forty minutes later, Barbara invited me to meet at her favorite sushi restaurant, where she persuaded me to write an article about the 25th anniversary of the Senate hearings on the safety of the Pill, which was coming up in January 1995. She convinced me that my article should not only cover the history of the Pill, but that it should educate a new generation about the entire women's health movement, and not only that, it should also be an investigative piece asking tough questions about why many women on public assistance received only hormonal contraceptives, not barrier methods.
I did write the article, and many others about the women's health movement after that. Barbara taught me much that I did not know and should have known. Over the next 13- and-a-half years, Barbara was my role model and friend. She still is my role model.
In case you are wondering, Barbara did not forget Shere Hite. She did put me in touch with her, and I did also write the article I had been originally calling about. Barbara was a fiercely loyal friend, and I miss her.
Jennifer Baumgardner: Glamorous, progressive, campy and radical
Barbara Seaman, who never went anywhere without ricola pearls and feminist pamphlets in her handbag, was my biggest mentor and also a really fun, loyal and unique friend. Although she was about 35 years older than me, she was the kind of friend I could call at midnight if I needed to hash out an idea or just get her advice. She babysat for my son as an infant when I traveled. She was a tireless booster, compulsive connector of people, and relentless lobbyist of friends. To pick up the phone with Barbara on the other line was to be convinced of something -- a dire issue that I had never really thought about before, but by the end of the conversation I would have agreed to hold a press conference to publicize a doctor's connection to the pharmaceutical industry.
Barbara's life was bizarre -- at once glamorous, progressive, campy and radical. One of my favorite memories of her is watching the Michelle Lee television movie version of Barbara's Jackie Susann biography with Barbara at her upper west side apartment. We drank a little white wine, discussed Andrea Dworkin's former campaign against the health feminists like Barbara and shrieked with laughter at Jackie's exploits. Jackie wanted "mass love" -- and got it when she broke publishing sales records with “Valley of the Dolls." Barbara wanted mass love, too. I first met her because she was worried that her cohort of feminists -- the ones who created the health movement -- was being overlooked by the recently written histories of the second wave. She wanted women like me to know about women like her. Her huge network of young feminist mentees (I was one of dozens) was strategic, in a way, but her interest in me was always so sincere and intense. She saw leadership in me that I had yet to see -- and I expressed feminist initiative, in part, to match what she was already claiming for me. When it came to mass love, she gave as good as she got.
Molly M. Ginty: A miracle of networking and spunk
She seized the podium at a New York City conference on domestic violence in 1996, her manicured fingers clutching the lectern with steely determination. Sweeping back her ash-blonde hair, Barbara Seaman told the harrowing story of her battles with her abusive ex-husband, while I scribbled notes for a journalism-school project. Then she took the seat next to mine, introduced herself as the author of The Doctor's Case Against the Pill, and announced that she and I were sharing coffee that very afternoon. Though I was just launching my reporting career, Barbara took time to counsel me, offering me help with story pitches -- plus sage advice on shoe shopping, birth control and love. With her silk scarf fluttering behind her, she shepherded me (and her many other mentees) to activists' and writers' gatherings. Barbara wasn't just the principal founder of the feminist health movement. She was a miracle of networking, wry humor, and spunk.
Karen Charman: Dared to challenge a powerful industry
Barbara was a cousin of one of my friends, and I met her at my friend's family Christmas party on the Upper West Side in December 1994, the year after I graduated from the Columbia University Graduate School of Journalism. A few months later, Barbara and I went to a presentation at the J-school hosted by then Dean Joan Konner. It had something to do with women in journalism, and Gloria Steinem was there. During the q & a, Barbara, a graduate of the school, confronted Konner and asked why the school never recognized her for her groundbreaking work, especially her book The Doctor's Case Against the Pill, published a year after she graduated. Konner smiled and politely sidestepped the question. It was a tense and awkward moment. In the cab on the way home, Barbara fumed about how the J-school seemed to be much more interested in not alienating the mainstream media, which has such strong ties to the pharmaceutical industry, than standing up for one of its own who dared to challenge a powerful industry.
Theresa Noll: Extraordinary spirit alive in new activists
Barbara Seaman's feminism stretched far beyond her professional dedication to the field of women's health and safety. She exhibited a genuine interest in others' lives and poured her energy into mentoring younger women. She had a special affection for those affiliated with her alma mater, Oberlin, a mutual connection that placed me in the line of her sharp vision back when I was finding my own feminist footing as a student there. Having read some of her work in a Women's Studies course, in 2005 I invited her to speak to my classmates on the subject of women's health. My invitation cemented our friendship before we'd even met in person, and when I moved to New York later that year, Barbara welcomed me into her circle of family and friends and helped me land my first publishing job. Her extraordinary spirit is alive in the new generation of activists she inspired.
Nan Orrock posted: 2011-07-06 15:28:58
Thank you for this moving tribute to Barbara Seaman - a tribute as well to the feminist health movement that has made such a difference and whose work is yet unfinished! I loved being re-introduced to On The Issues as well! The struggle continues - la lucha continua!
william walter posted: 2012-01-09 06:31:17
Like women, Respect women, men and women who molest the mind of another person are worrisome people to be with! people who have abilities to aid and protect others unknowingly are a joy to be with! I personally don't do any of those things. I leave my trust to the good will of the Elite ones; expecting respect for the privacy and civil rights my mind, body, and spirit are entitlled to. A person who respects both weak and strong people is like a boss who knows when to help a worker and when to get out of their way. A really smart person, like myself never chooses to use mind manipulation techniques on anyone. I don't need the anxiety that comes with being a mother, or father! The weight of helping others draws criticism from others. Some helpers are power grabbing bullies who disreguard the well being of some who are being helped for the good of the many. Having stumbled on this article about Barbara Seaman, it was a nice place to find, for she was clearly reaching out to all. People in families and people without families need to know things Mrs Seaman wrote about.
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