Barbara Brenner was 41 when she was first diagnosed with breast cancer, a diagnosis that led the lawyer and activist to join the board of Breast Cancer Action, a grassroots advocacy organization in San Francisco started by women with breast cancer. A year later, she became the organization’s first full-time executive director. Barbara retired in 2010 after being diagnosed with ALS (amyotrophic lateral sclerosis, a progressive neurodegenerative disease that affects nerve cells in the brain and spinal cord, leading to paralysis and death, commonly referred to as “Lou Gehrig’s Disease.”) Barbara spent the past two years coping with the illness and writing for social change. Barbara Brenner died from complications of ALS on May 10, 2013 at the age of 61 at her home in San Francisco.
I met Barbara Brenner in a book. In a collection of scholarly essays called Breast Cancer: Society Shapes an Epidemic, she wrote the final substantive chapter, which was about women creating a breast cancer movement. I had just begun my own investigation of breast cancer culture, industry, and advocacy. I re-read Barbara’s words many times. Today, as I gaze beyond the post-it notes, tabs, and highlights that cover the book, I see how insightful and prophetic her words were:
“Social change—both in the movement itself and in the scope and nature of the breast cancer epidemic—will come slowly. When that change does come, the result will be that all women with breast cancer will have clear choices for treatments that cure their disease without causing another one, and all people will live in a world where they are protected from the known causes of breast cancer. The road from here to there remains unmapped, but the breast cancer movement may yet pave the way.”
When I published Pink Ribbon Blues, ten years after I first read Barbara’s words, women still didn’t have clear and safe choices for treatment; nor were they protected from the known causes of the disease. Breast cancer had become more commercialized than ever. Mainstream advocacy was even more committed to pink ribbon community building, fundraising, and the myth of early detection as the fundamental savior for women. The medical establishment further invaded the nonprofit sector and patient advocacy efforts. Pink ribbon visibility supplanted real consciousness-raising. And the feel-good element of the breast cancer movement used its corporately funded megaphone to create a breast cancer brand with a pink ribbon logo.
Barbara was pissed off about this state of affairs. But she never gave up on the idea that things could be different. With Breast Cancer Action at her side, she pushed people to act, to demand, to expect more than what we’re getting in the so-called war on breast cancer. Her tenacity, insight, and pursuit of reason resonated with me, so much so that at the end of Pink Ribbon Blues I also wrote about the potential of a new road making a difference. “Taking a road less pink requires fundamental changes in the way we organize around breast cancer and in the questions we are willing to ask of ourselves, our families, our elected officials, our corporations, our medical system, our scientists, our media, and those who represent us in advocacy.” I wrote this knowing that some people were already out there, unrelenting in their pursuit of change. I wrote it knowing there were people like Barbara Brenner who refused to be silenced.
Barbara Brenner was anything but silent. She embodied the spirit of Audre Lorde, who believed that, “When I dare to be powerful, to use my strength in the service of my vision, then it becomes less important whether or not I am afraid.” Barbara Brenner was powerful, at times obstreperous. She never seemed to be afraid to call things as she saw them, and it didn’t seem to matter who got upset about it. Barbara Brenner reminded us that sometimes it takes ruffling a few feathers to dislodge complacency.
As I sit and think about Barbara Brenner and everything I learned from her, I feel a heavy weight around my heart. Who will push us to stretch our minds and abilities until we pave a new road in breast cancer? Who will keep us on the edge of our seats until people really are valued more than profits? Who will provoke us until we understand that the social, political, and economic structures that brought us to where we are in the breast cancer epidemic will surely keep us here unless and until we demand change? Most of all, who will remind us that if we are comfortable with the pink ribbon state of affairs, then we are part of the problem.
It’s up to us now.
In gratitude to Barbara Brenner,
Related: “Barbara Brenner, Breast Cancer Iconoclast, Dies at 61” by Denise Grady on May 20, 2013, The New York Times