Women’s Health Advocacy at Work

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I realized belatedly that writing a biography of a women’s health activist as my dissertation (and wrestling with the late journalist Barbara Seaman’s strong personality) was an exhausting task. I finished graduate school a semester late, burnt out, and in desperate need of a paycheck. So when I saw a job advertisement from a women’s health advocacy organization just a few towns over from mine and run by a longtime friend of Seaman, I was ecstatic. I applied immediately, got a request for an interview that same afternoon, and started a week later. Thus began my unlikely tenure as the Office Administrator of the Hysterectomy Educational Resources and Services (HERS) Foundation.

After experiencing debilitating side effects from what she describes as an unwarranted and unconsented-to hysterectomy in the late 1970s, Nora W. Coffey began to organize and connect with others to inform women about the alternatives to — and consequences of — hysterectomies. In 1982, she founded the Hysterectomy Educational Resources and Services Foundation. From her home office in Bala Cynwyd, outside of Philadelphia, Coffey still provides women who contact HERS with informational materials, doctor referrals, and one-on-one telephone counseling sessions.

The work seemed manageable enough: answer the phones, reply to emails using a template, schedule appointments, keep track of office supply levels. “Good morning, the HERS Foundation,” I would chirp, trying to stick to a phone script refined by my boss over many years for my predecessors. I distributed information about hysterectomy to women via email and postal mail. I mailed out 10-page hysterectomy questionnaires and sorted out those that returned, sneaking peeks at the decades’ worth of first-person narrative accounts in the process. I facilitated the emotional support of my boss’s telephone counseling sessions, keeping the schedule full, and only occasionally mixing up my time zone math.

Every day at the HERS Foundation, women were coming together about an important health care issue, supporting each other and raising awareness. Something about this seemed very familiar: the politicization of women’s bodies, the personal meeting the political, patient advocacy serving as a bulwark against medical sexism (particularly in gynecology) … I didn’t realize until about a month into it that I was quite literally living my dissertation.

It wasn’t just that my boss would occasionally interrupt my filing by interjecting with Barbara Seaman stories from across the room. Or that she would fill in details about friendships and events I could only guess at by reading texts against the grain, or however it is that we historians can squeeze meaning from the archive. Or that I would randomly find new primary sources I could have used in my dissertation, such as a reprinted speech by Seaman at a HERS Conference, going into incredible detail about her personal history with her own gynecologist.

It was the organization itself and the very doing of this kind of work that shook me. Here it all was, on the ground, an example of the grassroots praxis of women’s health activism that I so struggled to understand and chronicle. I was learning-by-doing, all clicks and light bulb flashes, while I tried earnestly to keep the office running. I played the anthropologist, participating in this project while fundamentally transforming my understanding of my own work.

In her materials and over the phone to the dozens of women who contact the organization each week, Coffey explains that women have reported many side effects after undergoing hysterectomy, ranging from diminished pleasure with sexual intercourse to personality change, memory loss to profound fatigue. Fundamental to HERS’ understanding of these side effects — and why women experience them after a hysterectomy — is what Coffey describes as the essential role of the uterus throughout a woman’s lifetime, even after menopause. Because of this, HERS does a significant amount of education about basic female anatomy, describing the uterus as a really critical hormone-responsive organ that is important for overall wellbeing. The uterus, HERS says, is also essential in women’s sexual enjoyment, due to its contractions during orgasm.

HERS is not completely anti-intervention. Coffey recognizes that there are scenarios where women do need to have surgery to correct something dangerous or to prevent or treat cancer. So, alongside her warnings about the consequences of hysterectomies, she offers information about alternative, more conservative surgeries. If a woman has an ovarian cyst, she suggests, why not see if the doctor will agree to remove just the cyst, or just one ovary if necessary? If a doctor suggests a hysterectomy for fibroids, she suggests counter-offering a myomectomy, in order to leave the uterus intact. She even collects the contact information of doctors with whom women have reported having good surgical experiences, for referrals.

Above all, Coffey argues that women should arm themselves with information about the procedures their doctors recommend and become empowered to make their own fully informed healthcare decisions. Truly informed consent cannot occur in a medical environment that is paternalistic, secretive, and sexist.

Yet the idea that, in some corners, women’s health care remains sexist and paternalistic is controversial to say the least. While working at HERS, I traveled to New York to give a lecture on my research that I called “Liberate Yourself From Your Gynecologist,” the title of Seaman’s third chapter in Free and Female (1972).

I presented the arguments that Seaman had made boldly and with characteristic aplomb in the 1970s — about the need to rid medical practice of sexism and instill informed consent as the guiding principle of the doctor-patient relationship — as interesting historical events. The Q&A session quickly devolved into a critique of my title choice, then a suggestion that I was endorsing this dangerous “liberation” of women from their gynecologists, and then finally a near shouting match between medical practitioners and members of Seaman’s family over a deeply personal character attack. Afterwards, a famous doctor came up to me to say that my very invitation to speak at a medical school had been “inappropriate.”

I could no longer maintain any semblance of the safe detachment between Seaman’s 1970s arguments and Coffey’s present-day claims that I had held onto. While I did not and still do not agree with some of HERS’ techniques, these fundamental assumptions about consent and equity in medical practice — particularly the emphasis on actually listening to women patients — are essential, then and now. Distracted and annoyed by Seaman’s colorful rhetoric, my audience seemed to have missed this point.

In The Doctors’ Case Against the Pill, published in October 1969, Seaman systematically detailed all of the reported side effects of the Pill that she could find. She devoted whole chapters to topics like “Strokes and the Pill,” “Cancer and the Pill,” “Diabetes and the Pill,” “How the Pill Can Spoil Sex.” There were eleven of these side effects chapters alone, each with descriptions of the conditions, statistics, and firsthand accounts of women who experienced the side effects.¹

Yet while the side effects of the Pill seemed very dangerous, Seaman argued, the biggest threat was what she called “the silence that could kill you” – that is, the unwillingness of doctors to share this essential information with patients. For most women, she explained, “The deceptively easy act of swallowing the innocent-looking pill is, in fact, an act of uninformed consent.”²

Early in the book she asked, “How many pill-users would still be taking these drugs if wives and husbands were fully informed about the drugs’ risks and about the disenchantment and dismay that are increasingly disturbing the inner councils of the medical profession?” “There is no way of knowing,” she answered, “until the full facts are laid before the public.”³

How, she wondered, was it possible that women were not aware of this damning information? She concluded, “Much of the evidence has been buried, in bits and pieces, in technical journals that are not accessible.”⁴ In Seaman’s view, it was the responsibility of science writers like herself to step in and make this information available to the general public. In bringing this information to light, women could make informed decisions about whether they should take the pill.

In part due to Seaman’s influence, in 1970 Senator Gaylord Nelson held Congressional hearings on the issue of oral contraceptive effects. This investigation brought together politicians, scientific experts, and women’s liberation protesters in a memorable and highly publicized series of hearings. This ultimately led to the FDA’s recommendation that a detailed patient package insert be distributed with all prescriptions of birth control pills.⁵

Back at HERS I read distraught emails and listened to women’s complaints. Even if their doctors did not take their accounts seriously, we did. Certain names and stories are forever burned into my memory. So much has changed since the 1970s, but so much has not.

To be perfectly honest, I was a terrible office administrator and Nora and I both knew it. I spent too much time daydreaming and critically analyzing everything going on in real time. Our office was also small, with just the two of us, and sometimes tense. At times we would sit there silently at our desks, waiting for the phone to ring to break the silence. I left just shy of the one-year mark.

I am grateful for this opportunity — for the telephone duties that finally broke that particular source of social anxiety, for the practical skills I picked up working in a “real” job, for the paycheck. But most of all, I am grateful for the reminder of why I chose my dissertation topic in the first place.

My dissertation was a biography, but it was never about Barbara Seaman. It was about the recognition and preservation of women’s voices as important and valuable. It was about the practice of listening to women and taking them seriously. It was about recognizing those who counter the sexist attitudes of people who say things like, “If you tell them the symptoms they’ll have them the next day,” or that women’s uteri are essentially useless blobs (unless housing babies that very moment), to be removed with the thinnest of excuses.⁶ This work is bigger than HERS, just as it was bigger than Seaman. They were conduits, chroniclers of women’s experiences. This, I realized, is a challenging task — but it is my job, too.

Notes

1. Barbara Seaman, The Doctors’ Case Against the Pill (Greenwich, CT: Peter Wyden, 1969). Return to text.
2. Barbara Seaman, The Doctors’ Case Against the Pill, 12. Return to text.
3. Ibid. Return to text.
4. Ibid, 13. Return to text.
5. For a more detailed account of this story, see Elizabeth S. Watkins, On the Pill: A Social History of Oral Contraceptives, 1950-1970 (Baltimore: Johns Hopkins University Press, 1998). Return to text.
6. Seaman, The Doctors’ Case Against the Pill, 16. Return to text.

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Featured image caption: Screen shot of the play UN BECOMING, which explores how women and those around them are impacted by hysterectomy. (HERS/Teleplay)