It’s March 1st, the start of Women’s History Month. And when I think of how much has changed for women — and how much has yet to change — I think, in particular, of our health.
In 1973, I was a freshman in college and was living just outside of Boston. Roe v. Wade had been decided in January of that year. The Watergate Scandal had broken in April. We were still extracting ourselves from Viet Nam, and I was writing regularly to a high school friend who was in the Army, caught in the last military draft of 1972. I was loaded down with college textbooks, but the book I really wanted to get my hands on was the one on the left, Our Bodies, Ourselves, a ground-breaking book published by the Boston Women’s Health Collective. The importance of the Collective’s work, the far-reaching influence it would have on women’s health, and the way that women were regarded by the medical community, cannot be overstated. From the preface of that 1973 edition:
In the beginning we called ourselves “the doctors group.” We had all experienced similar feelings of frustration and anger toward specific doctors and the medical maze in general, and initially we wanted to do something about those doctors who were condescending, paternalistic, judgmental and noninformative. As we talked and shared our experiences with one another, we realized just how much we had to learn….
My mother was one of those women who referred to her reproductive system by the phrase, “down there,” which was uttered in hushed tones. When she decided I was of an age to learn about the birds and the bees, she did not sit me down for a chat. Instead, she gave me a box about the size of a Manhattan phone book. Naturally, the box was pink. It contained a couple of slender booklets, a box of old-style sanitary napkins that were worn like a sling, and one of those elastic, garter-belt style items that was used to hook them up and keep them in place. Tampons had not yet been invented. I read the booklets, learning about the mystifying facts of female puberty and the onset of menarche, and learning not one thing about sex. I was eleven. By the time I was nineteen, I’d figured out quite a lot more, mostly from my girlfriends and through hands-on experience, shall we say. So, when I finally read Our Bodies, Ourselves that year, it was, needless to say, a revelation.
I was fortunate to be a young woman at that time, as well as fortunate to live near a city that provided good, enlightened health care for women. I was able to go to a women’s health clinic for gynecological care, and be treated like an intelligent human being, who was entitled to thorough information and caring advice. When I finally moved into Boston itself, the women of the Boston Women’s Health Collective were my neighbors. Susan Love was a young, practicing surgeon at nearby Faulkner Hospital, and she and I had mutual friends in our part of town. It would not be until 1990 that she first published her Breast Book, but among those of us in the Boston area, she was already a well-known figure, and the first doctor we would turn to should we have to face breast cancer.
From this springboard of consciousness about women’s health, another woman would also change the treatment landscape for women with breast cancer. In 1974, when she was 45, journalist and activist Rose Kushner was diagnosed with breast cancer. Like many of us who currently face this diagnosis, she was not content then to accept only the information she was given by physicians about her disease. Instead, she researched breast cancer herself. Back then, the universal standard of treatment in the U.S. was a one-step surgical procedure, during which a biopsy would be taken, and if found positive, would be followed by an immediate radical mastectomy, removing the entire breast, all the lymph nodes, and the muscles of the underlying chest wall, all while the woman was still under anaesthesia. Kushner refused to undergo this one-step procedure, and instead convinced her surgeon to perform only an initial biopsy. When that biopsy was positive, she had to go to great lengths to find a surgeon who would perform only a modified mastectomy, which would preserve her chest muscles. When she finally did, the resulting cancer tumor turned out to be only 1 cm.
After that experience, Kushner become a tireless advocate for informed consent, patients’ rights, and the importance of patients themselves speaking out about their experiences in order to change health care policy. In 1975, she helped found the National Women’s Health Network, an organization that continues to fight for women’s health by “developing and promoting a critical analysis of health issues in order to affect policy and support consumer decision-making. The Network aspires to a health care system that is guided by social justice and reflects the needs of diverse women.” [from NWHN’s mission statement] In 1979, at the National Institutes of Health conference on breast cancer treatment, Kushner was able single-handedly to influence the assembled panel to conclude that one-step biopsy and radical mastectomy was no longer appropriate as the standard of care. Thanks to her efforts, the panel would recommend that smaller, less disfiguring and debilitating surgery, combined with radiation, chemotherapy or both, could provide the same survival outcome. Following that triumph, President Jimmy Carter appointed her as the first non-medical member of the National Cancer Advisory Board. Together with surgeon Bernard Fisher, she helped recruit women for clinical trials to demonstrate the effectiveness of less invasive and toxic treatment, as well as lobbying Congress for research funding.
Kushner went on to write several books about breast cancer, including, If You’ve Thought About Breast Cancer, which is still available in an interactive, online version, made available by the Breast Cancer Advisory Center. The book is dedicated to Dr. Bernard Fisher.
In 1986, Kushner went on to help form the National Alliance of Breast Cancer Organizations, along with Diane Blum, Ruth Spear, and Nancy Brinker. [See Pink Ribbon Blues, by Gayle Sulik] The founding of this organization represented the launching of the modern breast cancer movement, whose mission was to continue to promote access to thorough information and advocacy for women as active participants with their physicians in determining their course of treatment. By the time Kushner died of metastatic breast cancer in 1990, the breast cancer movement was already beginning to diverge into several factions whose aims were not necessarily cohesive. NABCO struggled to maintain the integrity of its original mission, but it became increasingly difficult. The organization relaunched itself in 2001, but in June of 2004, it finally disbanded altogether.
Plus ça change, plus c’est la même chose.
The urgent need for cogent, complete, honest health information for all women, as well as access to competent and compassionate care, provided by sources without conflicting interests, remains. And it continues all too often to be a struggle to obtain when we need it most. During Women’s History Month, all of us need to remember the debt we owe to these women who have worked tirelessly to make our voices heard; to make our entitlement to genuine informed consent part of every health care encounter, every physician visit; to change public policy and not allow politics to erode access to safe, accessible treatment; and to demand that treatments are based on true efficacy and not solely on expediency. We still have a lot of work to do, but what has truly changed is that we have a path to follow. It is fitting, then, that the theme for this year’s Women’s History Month is “Our History is Our Strength.“
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