Our Bodies, Our Future

Our Bodies, Ourselves, 1973 CoverIt’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.

Please click on the post title or the comment link below to post a response.

This entry was written by Kathi, posted on Tuesday, March 01, 2011 at 05:03 am, filed under Art & Music, Attitude, Fighting the Pink Peril, Health & Healthcare, Making A Difference and tagged , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

8 Responses to “Our Bodies, Our Future”

  1. Excellent post Kathi and what a way to mark the start of Women’s History Month ! I think the fact the NABCO had to finally disband is just so sad, and telling of the the current breast cancer advocacy realm. In fact I would hardly call it a “movement” anymore, but simply a cacophony of divergent interests. How sad that Rose Kushner’s legacy seems to have been been drowned in the sea of pink amidst a backdrop of celebratory images of beauty, normalization, and feel-good experiences and products. What happened to our political voices? Where are today’s agents of change? Well they do exist, but not in the numbers they should. This aint over ’til its over.

  2. I enjoyed this too Kathi. Had to smile when I read about those sanitary towels like a sling….. horrible things! Made me I remember my first period! Like Anna though I too wonder what happened to our political voices. Women achieved so much in health – abortion on demand, contraception… and yet when it comes to breast cancer…. what happened? Women start wearing pink and smiling about a killer disease? What went wrong?

  3. I just got a nice email from Rose Kushner’s daughter. I had emailed her about a broken link I found on the website, which would lead to a PDF copy of Rose’s book, “If you’ve thought about breast cancer.” They are updating it, and she will be providing a fresh link to the PDF in about a month. I sent her a link to this post & thanked her for all that her mother did for us, and for all she and her father are continuing to do. 🙂

  4. Hi Kathi,

    This is a fabulous posting to celebrate Women’s History Month. It is really inspiring. I also remember the days of the sling-attached maxipad and when moms didn’t talk about sex or puberty with their children. Unbelievable.

    Thank you once again for this thought-provoking piece of work!

  5. This is a wonderful essay, Kathi. It’s so interesting to read about the truly grass roots efforts that formed the women’s health movement, the real people in neighborhoods talking to each other about needed change, and taking action to spur it on. There’s a reason social movements start from the ground up. And, you’re right: “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.” We need to come together again, feed our roots, and grow a new movement. Right on!

  6. This is a wonderfully-written piece and a true tribute to our foremothers! It’s amazing to think that it wasn’t too long ago that treatments for breast cancer were so generic, not to mention traumatic. We’ve come a long way but, as you point out, we have more mileage to go, not only regarding treatments and coverage for breast cancer, but for gynecological cancers…you know, the ones “down there.” 😉

  7. It was amazing to be a young woman in Boston at the time. While we all didn’t know each other personally, it seemed that a lot of us who were working for women’s rights in our various ways lived in a Boston neighborhood called Jamaica Plain. The neighborhood motto at the time was, “There’s nothing plain about Jamaica Plain.” Oh, was that ever true! Another group of the change-makers lived in Cambridge, just across the Charles River. I had a foot in each neighborhood for many years, living in Jamaica Plain and often working in Cambridge. For my part, those were the years when I got involved in helping start a magazine called Woman of Power, a quarterly journal that managed to stay in business for about 14 years, I believe. I should write a blog about that sometime!

  8. Kathi,
    Great post here reminding us of how things have changed, but yet have not. Sounds like we are from the same era! I remember many of the same things you speak of! I started off in one of those garter belt contraptions! Unbelievable! This post really speaks to the point that change is a long process and each generation must continue moving things along. Undoubtedly, some changes need to be speeded up a bit though.

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