White Crane #66, The State of the Gay Body

The Boston Women’s Health Book Collective
and Our Bodies, Ourselves

Judy Norsigian*

Editor’s Note: This article offers a brief history of Our Bodies, Ourselves,(OBOS) the landmark book about women’s health and sexuality first published in 1970. Some might reasonably ask what a book on women’s health has to do with gay men’s health. It is the our opinion that aside from our overarching concern and connection with all struggles for equality and integrity in the community, gay men’s lives are inextricably linked to women’s. What we share with women is a struggle rooted in gender roles — that is our common ground. OBOS is still considered a “dangerous book” and is one of the prime targets of the radical religious right. In 1970, they showed women their cervix, talked openly about same-sex relationships, and helped get women safe information about sexual assault. Alas, not much has changed since OBOS first published the chapter In Amerika They Call Us Dykes!

One might also reasonably ask that if AIDS had hit in the lesbian community, whether gay men would have responded with the same unquestioning and devoted speed gay women responded to HIV and gay men’s health? How have gay men responded to breast cancer in the lesbian community?

On a macro scale, “feminism” is, ultimately, “humanism in skirts,” freeing men and women from the constricted and stifling roles of patriarchy (and matriarchy and hierarchy.) “Misogyny” and “homophobia” are inbred cousins.

We are pleased to share some of our earlier history with readers of White Crane. Although we have not been a collective for some years and now operate as a more traditional non-profit public interest organization, we still emphasize collegial relationships and the importance of hearing everyone’s opinions, even though decision-making is now concentrated in the hands of the organization’s formal leadership. Very few of the founders of the Boston Women’s Health Book Collective are now active with the organization (now called Our Bodies Ourselves), but a few of us are still involved, and a few others participated in the production of the 2005 edition of Our Bodies, Ourselves.

Our Early History

The history of Our Bodies, Ourselves (OBOS) and the Boston Women’s Health Book Collective (BWHBC) began in the spring of 1969 at a women’s liberation conference held in Boston. At a workshop on “Women and Their Bodies,” we discovered that every one of us had a “doctor story.” We had all experienced frustration and anger toward the medical maze in general, and toward those doctors who were condescending, paternalistic, judgmental, and uninformative in particular. As we talked and shared our experiences, we realized just how much we had to learn about our bodies, that simply finding a “good doctor” was not the solution to whatever problems we might have. So we decided on a summer project: we would research our questions, share what we learned in our group, and then present the information in the fall as a course “by and for women.” We envisioned an ongoing process that would involve other women who would then go on to teach such a course in other settings.

In creating the course, we learned that we were capable of collecting, understanding, and evaluating medical information; that we could open up to one another and find strength and comfort through sharing some of our most private experiences; that what we learned from one another was every bit as important as what we read in medical texts; and that our experiences frequently contradicted medical pronouncements. Over time these facts, feelings, and controversies were intertwined in the various editions of OBOS.

When we began this work, our ages ranged from 23 to 39, and we focused heavily on reproductive health and sexuality, new issues in the second wave of feminism. As we revised subsequent editions of OBOS, we included more material on such topics as environmental and occupational health, menopause and aging, often at the behest of readers and with outside help. At this writing, those of us in the original group range in age from our late 40s to our mid-60s, and one of our original members, Esther Rome, has died of breast cancer.

In the 1970s, we worked together in “cottage industry” mode at home or in libraries, often meeting together around our kitchen tables. In 1980 we consolidated our books, articles, and correspondence in a rented office and began to hire women not part of the original Collective to do cataloging and to help with other tasks. This effort marked the beginning of our Women’s Health Information Center (WHIC) and two decades of networking and information sharing that has extended beyond the publication of OBOS to a number of women’s health education, activist, and advocacy projects involving us locally, nationally, and internationally. We supported the founding of the National Women’s Health Network—the first national women’s health advocacy membership organization. We were also among the few women’s organizations calling for universal health care in the 1970s, and we supported Congressman Ron Dellums’ National Health Services Act, a visionary bill that included provisions for contraceptive, sexually transmitted disease, and abortion services, and access to midwives and out-of-hospital childbearing options. Internationally, we served on the Advisory Board of ISIS (an information and communication service focused on women in developing countries), distributed packets and books to health workers and groups overseas, attended global women’s health meetings, and ensured, when possible, that women’s groups translating OBOS would be able to reap royalties to support their work.

The founders of the BWHBC were all college educated, but a significant number of us were from working class backgrounds and were the first in our families to attend college. Some of us had professional degrees, but none of us were in health fields. Many of us had been active in the social protest movements of the 1960s, particularly the civil rights movement, the antiwar movement, movements for women-centered childbirth and legal abortion. Some of us came from families with histories of struggle for social justice. Others of us came of age during a time of social change and found our own way to political activism. When we came together as part of a larger women’s liberation movement, we were thrilled by the realization that working for social justice could affect the conditions of our lives as women. We believed that with our newfound freedom and solidarity as feminists, we could be more effective advocates on behalf of ourselves and other women, as well as other progressive causes.

Recent Growth and Development

Over the nearly three decades since the first edition of OBOS, we have continued to develop our awareness of the injustices that prevent women from experiencing full and healthy lives. As we approach the millennium, such causes of poor health as poverty, racism, hunger, and homelessness continue to disproportionately affect black and brown populations in this country and around the world. We continue to believe that effective strategies for mitigating these problems require all of us to reject the assumptions that so often hurt women of color and women who are poor. Over the years we have collaborated with women’s groups both in the United States and abroad to ensure that the priorities for the women’s health movement reflect the needs and concerns of all women. We also recognize the importance of supporting the leadership of women of color and low-income women within our own organization as well as in the larger women’s health movements. Although this is a difficult challenge for many groups founded originally by white women, we believe that our ultimate success as a movement depends on respectful collaboration at many levels.

BWHBC’s own structure has evolved over the years. We began as a collective, a circle of 12 women who met weekly and grew together both personally and politically, raising our own consciousness about health and sexuality as we reached out to inform others. We took no profits from sales of the books, using royalties to support women’s health projects and eventually to start our own WHIC and advocacy work. As soon as we hired staff who were not authors of the book, the BWHBC was not formally a collective anymore, although the board (mostly original authors) and the paid staff each worked in a largely collaborative manner.

As the staff grew, so did organizational tensions and the need to develop a different model of management. For the past four years, the board of directors—now a more diverse group than it was originally—worked closely with a variety of consultants to shape a structure for the BWHBC that would introduce mechanisms of accountability that are consistent, dependable, and consonant with feminist principles. The organization now has a unionized staff (including a signed union contract) and formally designated leadership positions that operate in quite a different manner from the earlier years.

During the past few years a major revision of OBOS was also produced, Our Bodies, Ourselves for the New Century. For this edition we expanded our efforts to include other women whose backgrounds and experiences are different from the original co-authors in terms of race, class, ethnicity, geographic origin, and sexual/gender identity. This experience helped us develop an even greater appreciation for the challenges facing any organization working across differences, many of which have the potential to separate us.

BWHBC’s Role in the
Global Women’s Health Movement

Within five years of its first publication, OBOS became a bestseller first in the United States, and then internationally (more than 4 million copies have been sold to date). Almost 20 foreign-language editions have been produced, including Japanese, Russian, Chinese, Spanish, French, Italian and German versions. Women in Egypt produced an Arabic book modeled after OBOS, as women are now doing in French-speaking Africa. More projects are underway today in Asia, Eastern Europe, and Armenia. At the 1995 NGO Women’s Forum in Beijing, many of the women working on these translation/adaptation projects came together to compare notes and to share strategies for dealing with problems such as government censorship and fundraising.

In all editions of OBOS, we have encouraged women to meet, talk, and listen to each other as a first step toward bringing about needed change. Over the years, we have developed a number of fruitful collaborations with women’s groups in different countries and have attended many international women and health meetings that have been convened since the first “International Conference on Woman and Health” held in Rome in 1977. The activism of women’s health groups across the globe has been spurred by the advent of email and the Internet, and we are excited to be part of a growing web of organizations working on such issues as breastfeeding, maternal mortality, and environmental health hazards.

Women from around the world face a formidable challenge. On one side are the fundamentalists led by the Vatican; on the other is the population establishment. Both are vying for control over women’s sexual and reproductive lives. While the fundamentalists outlaw contraception and abortion, the populationists push new reproductive and contraceptive technologies.

The Continued Need
for a Women’s Health Movement

The concerns that brought women together several decades ago to form women-controlled health centers, advocacy groups, and other educational and activist organizations largely remain. Women are still the major users of health and medical services, for example, seeking care for themselves even when essentially healthy (birth control, pregnancy and childbearing, and menopausal discomforts). Because women live longer than men, they have more problems with chronic diseases and functional impairment, and thus require more community- and home-based services. Women usually act as the family “health broker:” arranging care for children, the elderly, spouses, or relatives, and are also the major unpaid caregivers for those around them.

Although women represent the great majority of health workers, they still have a relatively small role in policy making in all arenas. Despite increases in the number of women physicians, they also have a limited leadership role in US medical schools, where women represent less than 10% of all tenured faculty. Women face discrimination on the basis of sex, class, race, age, sexual orientation, and disability in most medical settings. Many continue to experience condescending, paternalistic and culturally insensitive treatment. Older women, women of color, fat women, women with disabilities, and lesbians routinely confront discriminatory attitudes and practices, and even outright abuse.

Women usually find it difficult to obtain the good health and medical information necessary to ensure informed decision making, especially for alternatives to conventional forms of treatment. This problem is intensified for poor women and for those who do not speak English, in part because their class, race, and culture increasingly differ markedly from those of their health care providers.

Many women are subjected to inappropriate medical interventions, such as overmedication with psychotropic drugs (especially tranquilizers and antidepressants), questionable hormone therapy, and unnecessary cesarean sections and hysterectomies, although managed care has reduced the rates of unnecessary surgery in some places. The medical care system has been slow to recognize the importance of preventive and routine care, as well as the need for more rigorous study of alternative (non-allopathic) approaches to women’s health problems that have not responded well to conventional forms of treatment.

Despite enormous advances for women over the past two decades, ongoing gender bias in public and private settings continues to relegate women to a separate and unequal place in society. We must have a strong community of women’s organizations to assist women individually, to articulate women’s needs, to advocate for policy reform, and to resist the more destructive aspects of corporate medicine. Organizations such as the National Women’s Health Network, the National Black Women’s Health Project, the National Latino Health Organization, the National Asian Women’s Health Organization, and the Native American Women’s Health Education Resource Center, to name just a few, could play a key role in insuring that lay and consumer voices are part of any larger women’s health debate. The inclusion of such groups by the office of Women’s Health Research at the National Institutes of Health already has enriched discussions concerning research affecting women.

Ironically, except in a handful of states, poor women on Medicaid can obtain a federally funded sterilization but not a federally funded abortion. This limitation has led some women to "choose" sterilization because they have so few options. As the women’s health movement continues to emphasize, without access to all reproductive health services, there can be no real choice in matters of childbearing.

Over the years, the BWHBC has collaborated with physicians who have shared the feminist perspective represented in OBOS. One such colleague, Mary Howell, MD, (more recently known as Mary Raugust), died from breast cancer in February 1998. The author of a popular 1972 book entitled Why Would a Girl Go into Medicine? and the first woman dean at Harvard Medical School, Mary contributed to the research that resulted in a legal ruling forcing medical schools to eliminate female quotas. These informal quotas had kept the female presence in medical schools well below 20 percent of the total number of students since the turn of the century. She remains for us one of the finest role models for women in medicine, and we hope that her speeches and writings will be published to inspire the younger generations of female physicians. Another physician, Alice Rothchild, MD, has written and spoken eloquently about her experience as a feminist obstetrician-gynecologist, and we have made her 1997 AMWA speech available at our website.

Members of the media often ask us if we think that progress has been made in addressing the concerns women have had about medicine. We believe that physician awareness of condescending and paternalistic behaviors that are now generally regarded as disrespectful elsewhere in society has been heightened. It also appears that more women feel that their physicians take their concerns seriously, rather than dismissing their complaints with “it’s all in your head.” But other problems have been exacerbated, and although not unique to women, women’s more frequent contact with the medical care system means women confront these issues much more regularly than men do.

Many managed care plans have contributed to reductions in access to care, especially good quality care, for some women. They have, for example, not allowed some physicians to provide needed treatments. Sometimes, physicians have not had the time to adequately assess the plethora of new drugs and medical technologies that they regularly recommend to patients. Cutbacks in local community services and public health programs make it harder to sustain an emphasis on preventive health care.

The BWHBC has a special interest in such problems as the increasing influence of right-wing organizations over public policies affecting women’s health, the explosion of health and medical technologies marketed primarily to women, the objectification of women’s bodies in the media, the exclusion of consumers from policy setting and oversight functions in many managed care plans, and the relatively few sources of noncommercial information about women and health, especially with a well-informed consumer perspective. We recognize institutional racism as a continuing problem exacerbated by the fact that most caregivers and health care administrators come from economic, social, racial and ethnic backgrounds quite different from those of the people they are serving. Finally, we believe it is critical to challenge the tendency to over-“medicalize” women’s lives and turn normal events such as childbearing and menopause into disabling conditions requiring medical intervention.

As the WHM moves into the 21st century, our ability to build broad coalitions will, to a large extent, determine our political effectiveness. The emergence of “single-issue” organizations (for example, the Endometriosis Association and the Interstitial Cystitis Association) may make it harder to keep the broader feminist context in focus, although these organizations do provide women with important information and support. The WHM’s ultimate ability to influence national health care reform—if and when it should happen—may well depend upon effective collaboration and networking among many diverse organizations.

As we gain access to the mass media or work in small groups at the community level, we must constantly keep in mind a broader agenda for social change and forge new links with the disability rights movement, the various aging movements, and the civil rights movement. As part of the larger women's movement, which still needs to find better ways of sharing power and resources among the many women's organizations claiming to hold values and goals in common, the WHM faces an extraordinary challenge in a political climate increasingly hostile to women.

Although the WHM has had significant impact on the consciousness of many, it has not yet changed the basic way most medical institutions are run. Many of the inequities that stirred feminists to action in the early 1970s remain. Poverty, the single most important factor affecting health and well-being, affects a growing percentage of the population. Violence persists as a major cause of disability and death among women. Amidst worsening statistics, it will take patience, stubborn persistence, and a good sense of humor to sustain a movement that has had much to be proud of.

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*Judy Norsigian was joined by Vilunya Diskin, Paula Doress-Worters, Jane Pincus, Wendy Sanford, and Norma Swenson in authoring this piece which was originally published in the journal of the American Medical Women's Association For further information visit ourbodiesourselves.org

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