Feminism and the BRCA+ Community

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Andrea over at Brave Bosom has a post about labels in the BRCA+ community: “advocate” versus “activist,” “feminist,” and “previvor.” I’ve already talked about my hesitation to use the “previvor” label, but I realized that despite the fact that this is a feminist BRCA+ blog, I have not yet posted about why the HBOC community needs feminism.

First, some twentieth-century American history (courtesy of Barron H. Lerner’s Breast Cancer Wars).

Decade after decade, surgeons continued to disfigure women’s bodies with the Halsted mastectomy despite the fact that it was not saving lives. Women who received Halsted mastectomies did not have better survival rates than women who did not have the surgery. Still, doctors continued to push the procedure. Surgeons were the macho heroes of the medical world and the Halsted was the masterpiece that showed off their skill. Nevermind that it left women physically and psychologically scarred or that medical evidence indicated that the Halsted mastectomies were unnecessary or unsuccessful.

At that time, doctors didn’t even have to tell women their true prognosis, and thanks to infantilizing paternalistic attitudes within patriarchal medicine, many  doctors thought women couldn’t handle the truth about their health, so they just didn’t tell them. In fact, women were rarely even offered the opportunity to make choices about whether or not to have surgery: if breast cancer was suspected, a woman was put under anesthesia for the biopsy and if the biopsy found cancer, then a mastectomy was immediately performed without consulting the patient.

Nowadays, women diagnosed with breast cancer have more options. They can have lumpectomies. They can have chemotherapy or radiation. They can choose from a range of mastectomies–skin sparing, nipple sparing, simple, etc.–and  reconstructive procedures. They make these choices through informed consent. They have a variety of resources, support groups, and networks to turn to. They can often tell their stories without shame or censure. You can thank feminists for all this (not that anyone ever does).

I don’t mean, of course, that feminist doctors invented these procedures. I mean that feminist activists spent decades demanding that doctors stop needlessly hacking into women’s bodies with the Halsted mastectomy and seek alternatives based on objective medical evidence like randomized clinical trials. Feminist activists were relentless in advocating for women patients. And when the deeply conservative medical community resisted change, feminist activists created their own networks to share information, lobby, and provide support. In this way, the modern breast cancer community emerged out of the Women’s Health Movement of the 1970s and 1980s, which was itself a product of Second Wave Feminism.

In recent years, the feminist roots of breast cancer activism are often overlooked, as conservative anti-feminist organizations like the Komen foundation and other pinkwashers have co-opted and sanitized feminist rhetoric and iconography. At the same time, pink ribbon culture pushes  conventional gender roles on survivors and previvors alike, often ignoring the experiences of women who don’t fit the optimistic breast cancer warrior model (women of color, the poor, queers, etc.). The medical industry remains a strongly patriarchal establishment. There is much work to be done.

At the moment, mainstream feminism largely ignores the issues BRCA+ women face. This leaves BRCA+ feminists like me out in the cold: without a feminist discourse to guide our thinking on HBOC and alienated by the conventional gender roles and pinkwashing endemic to the breast cancer community in general and the BRCA+ community in particular. Thus this blog. Still, feminists were among the earliest commentators questioning the ethics of genetic testing and they have been at the forefront of the fight against gene patenting for many, many years. Most BRCA+ women already believe in the feminist tenet that a woman has the right to bodily autonomy and integrity.

Despite the fact that I firmly believe the BRCA+ community needs feminism, I highly doubt the feminist label will catch on there. It is rather notoriously the other “F word.” Too many women strive to distance themselves from it. They think feminists are shrill (heaven forfend!). They think feminists hate men. They think we already live in a world of gender equality (ahaha!). They don’t know women’s history well enough to know what feminism has already done for them. Nonetheless,  most women enjoy rights that feminist activists fought decades to win: things like voting, having credit cards in their own names without their husband’s consent, and having legal recourse for sexual harassment, sexual assault, stalking, etc. In other words, women of all political backgrounds have benefited from the hard won gains of feminist activism, even women who have dragged their heels to resist change. That’s true within the breast cancer and HBOC communities as well.

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