Credit: Nicole Marie Edine on Flickr, under Creative Commons (CC BY-NC-ND 2.0)
(WOMENSENEWS)– At the beginning of the 20th century, the major causes of death for women were infectious diseases (tuberculosis, syphilis, pneumonia and influenza). By the end of the 20th century, those major causes had shifted to chronic illnesses (cardiovascular disease, cancer, stroke and diabetes).
This may seem like an enormous change, and in many respects it was, but the bookends share one fundamental characteristic: infectious diseases, cardiovascular disease, some diabetes and cancers are often in part preventable. We know much more about these chronic conditions today, as well as what we might do to help minimize our risk of developing them, yet so much that determines the diagnosis, prevention and the course of illness lies beyond basic physiology.
Between the changes in medical and research ethics, the desegregation of hospitals and the advent of Medicare and HMOs, health care was an increasingly large-stakes political issue in the 1960s and 1970s. A similar call to action to the one occurring for minorities, elderly and the disabled during this era of social justice was taking place for women. As scholar Beatrix Hoffman observed, “Although each movement had its leaders, each relied on grassroots participation, or ‘change from below’: They were made up of ordinary people demanding reform, often on their own behalf.”
The importance of this “change-from-below” aspect of reform in the United States cannot be overstated, as it not only propelled the civil and disability rights movements taking place but characterized much of the patient advocacy that would become so integral to the chronic illness experience. For example, in “Pink Ribbons, Inc.: Breast Cancer and the Politics of Philanthropy,” Samantha King connects the women’s health movement’s criticism of the patriarchal structure of medicine with helping build a foundation for the breast cancer activists who would soon follow.
The women’s health movement gave credibility to those with chronic illness, from the individual patient in an exam room who realized she had a valuable role in her health management and her relationship with her physician to the various disease and patient advocacy groups that would emerge. Each can point at least partially to the work done by women’s health advocates in the 1970s. While Congress and presidents haggled out agreements on Medicare and bioethicists and philosophers pondered the implications of life-prolonging technology and transplantation, it was patients, advocates and those who felt they were treated like second-class citizens who empowered change.
For women, this change started with the radical notion that they had a right to know about their own bodies, had a right to control their own health care and belonged in medical schools where they could fully participate in the very health care decisions that have such significance in their lives. The grassroots women’s health activism that emerged in the late 1960s and early 1970s was fostered by an equally diverse group of advocates, among them middle-class white women, middle- and working-class African Americans, lesbians and heterosexuals.
Women’s health activists shared the same type of vision for female patients, and the conversations surrounding what was possible, if not essential, for the doctor-patient relationship and women’s health turned thoughts into action. The results were concrete and monumental. In 1966, the National Organization for Women was formed. Part of the founding mission statement includes the aim to “bring women into full participation in the mainstream of American society now, exercising all privileges and responsibilities thereof in truly equal partnership with men.” The extension of those ideals of a truly equal partnership and full participation is a natural one, especially given the legal, scientific and political shifts around women’s reproductive health at the time.
The move away from medicalized pregnancies and births was one way women claimed control of their bodies. The practice of using midwives experienced resurgence in the 1970s, as women tried to create more natural settings for their childbirths and move them away from hospitals (which, more and more patients were spending longer amounts of time in by this point).
Women’s advocates helped educate patients about the birth control pill, which was first available in 1960. When early versions were linked to increased risk of stroke, blood clots and cardiovascular disease, advocates helped spread this information. In response to these concerns, the Food and Drug Administration included with birth control prescriptions the first drug safety pamphlet written specifically for consumers that outlined both its risks and benefits.
The landmark court case Roe v. Wade, which legalized abortion in 1973 by finding that preventing a woman’s right to end her pregnancy violated her due process, was a pivotal piece of legislation in terms of reproductive rights, women’s health and women’s ability to make decisions regarding their bodies. It was obviously a controversial ruling, one that also gave momentum to the right-to-life movement that proved so influential in the Karen Ann Quinlan case and to matters of life and death today.
Most Influential Conversation
One of the most influential and far-reaching conversations about what is possible for the doctor-patient relationship and empowerment and women’s health took place in 1969, at an eight-woman conference at Emmanuel College in Boston. The paternalism of modern medicine was renounced in favor of finding practitioners willing to share their expertise, and the women, who called themselves “the doctors group,” took on the task of researching as much as they could about women’s anatomy and physiology, venereal diseases, pregnancy, menopause and nutrition. This ultimately developed into the first printing of the epochal “Women and Their Bodies” in 1970. Filled with information on pregnancy, menopause, sexually transmitted disease, female anatomy and physiology, and other topics, the retitled “Our Bodies, Ourselves” went on to sell millions of copies and embodies the grassroots ideal that women should have access to and understanding of what goes on in their bodies. Here again the “groundup” nature of the movement is apparent: women researching relevant health matters and sharing that information with other women. This was no dry, medical tome written by obstetricians and gynecologists.
Feminism challenged social practices in the doctor’s office and recast relationships between compliant patient and infallible physician as part of the larger process to keep women down. It wasn’t just gender that women’s health activists challenged; it was also the politics of professionalism. The broader issue of how men dominated women became inextricably linked to the medical sphere and how doctors, who were predominantly male, dominated their patients. Feminists at the time reframed the history of medicine as a history of exclusion: women excluded or discouraged from medical education, midwives excluded from the delivery room and women excluded from conversations about their very health.
Reprinted from “In the Kingdom of the Sick” by Laurie Edwards.” © 2013 by Laurie Edwards. Used with permission by Bloomsbury USA.
Laurie Edwards is an award-winning health writer and patient advocate. Her latest book, “In the Kingdom of the Sick: A Social History of Chronic Illness in America” (Walker, 2013), explores patient rights, the role of social media in medical advocacy, the origins of our attitudes about chronic illness, and much more.
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