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So Much to Be Done

The Writings of Breast Cancer Activist Barbara Brenner

2016
Author:

Barbara Brenner
Barbara Sjoholm, Editor
Afterword by Anne Lamott
Introduction by Rachel Morello-Frosch

So Much to Be Done

Political and inspiring, personal and influential—the writings of Barbara Brenner, who transformed the way we look at breast cancer

The power behind the national organization Breast Cancer Action, Barbara Brenner brought an abundance of wit, courage, and clarity to the cause and forever changed the conversation. Brenner’s columns and blog posts, collected in So Much to Be Done, form a chronicle of breast cancer research and health care activism that is as inspiring as it is informative.

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 reminded us that sometimes it takes ruffling a few feathers to dislodge complacency.

Gayle A. Sulik, PhD, author of Pink Ribbon Blues

“What kind of cancer is it?” was the first question Barbara Brenner asked her doctor after hearing that the lump in her breast was malignant. His answer: “You don't need to know that.” Wrong response. Brenner, who was already an activist, made knowing her business and spreading knowledge her mission. The power behind Breast Cancer Action and its transformative Think Before You Pink® campaign, Barbara Brenner brought an abundance of wit, courage, and clarity to the cause and forever changed the conversation. What had been construed as an individual crisis could now be seen for what it was: a pressing concern of public health and social justice, with environmental issues at the center of prevention efforts.

Collected in So Much to Be Done, and framed by personal accounts of Barbara and her influential work, Brenner’s columns and blog posts form a chronicle of breast cancer research and health care activism that is as inspiring as it is informative. As she takes on the corporate forces at work in breast cancer research and treatment and in the “pinkwashing” of fund-raising for the cause, Brenner, a self-described hell-raiser, contends with cancer herself, twice, and her words offer understanding and encouragement to all those whose lives are touched by the disease.

When Brenner was diagnosed with ALS in 2011, she broadened her critique of health care while also writing about her own experience. Infused with her characteristic moxie, humor, anger, and compassion, these reflections from her last two years provide an in-depth, precisely observed portrayal of what it is to live with a terminal disease and to die on one’s own terms.

So Much to Be Done

A key figure in North American breast cancer history, Barbara Brenner was executive director of the nonprofit organization Breast Cancer Action, based in San Francisco. She died in 2013 at the age of sixty-one.

Barbara Sjoholm is an author and translator. She was a cofounder of the feminist publisher Seal Press and an editor of many works of women’s studies.

Rachel Morello-Frosch is professor of environmental science, policy, and management at University of California, Berkeley, and a member of the scientific advisory board of Breast Cancer Action.

Anne Lamott is the author, most recently, of Small Victories, which includes an essay about Barbara Brenner.

So Much to Be Done

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 reminded us that sometimes it takes ruffling a few feathers to dislodge complacency.

Gayle A. Sulik, PhD, author of Pink Ribbon Blues

Barbara was the person who most influenced my own thinking and writing about breast cancer. Only now is the rest of the world catching up to where she was over a decade ago on critical issues: the limitations and harms of screening, the problem with pinkwashing, the conundrum of DCIS, the dearth of funds for metastatic disease, the need to merge breast cancer activism and environmentalism, the need to better track research. I owe so much to Barbara as a writer, as a thinker, as an activist, as someone living with breast cancer, and as a woman.

Peggy Orenstein, author of Cinderella Ate My Daughter

A visionary like Barbara Brenner comes along so rarely, and when such a person has left a wealth of insightful commentary filled with brilliant analyses and trenchant wit, we are doubly fortunate. Social justice activists, breast cancer and consumer advocates, academics, feminists, and anyone else interested in how breast cancer intersects with other key environmental and women's health concerns will find this edited collection of Barbara's writings a treasure trove of tools and ideas for making this world a better place for all.

Judy Norsigian, cofounder, Our Bodies Ourselves

Barbara transformed how health scholars and advocates think and act politically. Her pointed and often comical reflections on pink ribbon culture and her experience of living with ALS challenged her readers to ask difficult questions about well-intentioned generosity and compassion, both individual and corporate. A thinker and a doer, Barbara inspired us to move beyond passive skepticism and toward action to challenge the status quo of health funding, research, and care.

Samantha King, author of Pink Ribbons, Inc.

Readers will learn to prize the activist as well as the woman behind the message.

Library Journal

Brenner is simultaneously heartfelt and acerbic, which makes this collection both engrossing and darkly humorous.

American Library Association’s GLBTRT Blog

Why should you read this book? Because this is not another pity-party book written by someone with a life-threatening illness.Not once does she mourn for her losses—instead Brenner always shows the world that she is still capable, still living, still loving, and still fighting.

Lambda Literary

So Much to Be Done

Contents
A Portrait of Barbara Brenner
Barbara Sjoholm
Introduction: Barbara Brenner, Breast Cancer Action, and the Birth of a Politicized Breast Cancer Movement
Rachel Morello-Frosch
Part I. Building a Movement, 1995–2010
Hope, Politics, and Living with Breast Cancer
Loss and Inspiration
Let Them Lick Stamps
Fiddling While Rome Burns: The Latest Mammogram Controversy
Reflections on a Handmaid’s Tale
Words Matter
My Sister’s Keeper
Educate, Agitate, Organize—Now!
One Pill Makes You Smaller . . .
Thinking Out Loud: Toward a New Research Strategy
Rolling the Dice
Respecting the Past, Creating the Future
Making Choices
Living on the Edge
Breast Cancer Treatment: Promise versus Reality
Exercise Your Mind
The Crazy Days of Autumn
Lessons from Long Island
Waging War, Making Connections
Solving the Breast Cancer Puzzle: Advancing the Research Revolution
Forests and Trees: Reflections on Pink Bracelets and Narrow Visions
Fifteen Years of Activism: Standing on Many Shoulders
Era of Hope, Hype, or Hoax: Is It Time for Change in the DOD Breast Cancer Research Program?
Meaningful Results: Getting What We Need from Science
BCA’s Survey on Aromatase Inhibitors: Meeting the Needs of Patients
Moving beyond the Personal in Environmental Health
Putting Patients First: The Need for Better Standards at the FDA
The Organic Process of Activism: Think Before You Pink®, Then and Now
Breast Cancer Awareness Month: The Present Looks like the Past
So Much to Celebrate, So Much to Be Done
Part II. Thoughts on Dying and Living, 2011–2013
Don’t Ask Me How I Am
Patient? Who’s Patient?
Don’t Make Promises You Can’t Keep—Especially in Health
Isn’t It Time to Change the Message?
Uncertainty, a Teaching for Rosh Hashanah 5771
A New Name
Passover
There’s That Person with . . .
The Obligation of Privilege
Can and Can’t List
That’s Why They Call Them “Trials”
People’s Lives as the Endpoints of Medical Research—Now There’s a Nifty Idea
Understanding Health Numbers: Not Easy, but Important
Having a Voice, Communicating, and Somewhere in Between
Walk for Your Health, but It Won’t Help Anyone Else’s, Much
Thoughts on Dying and Living
How Do You Spell Chutzpah? K-o-m-e-n
Drug Development and Access: Time to Act like Lives Depend on It
Science by Press Release—Not Good News for Patients
Health Activism—Not for the Faint of Heart
Pink Ribbons and Lou Gehrig: Time to Bury Useless Symbols
Mi Shebeirach: Thoughts on Illness and Blessing
Is October over Yet?
Labyrinth
IOM Report on Breast Cancer and the Environment: What Komen’s One Million Dollars Bought
Gloves Off: What the Fuck, Komen?
Yosemite
Smith College Medal
Context Is Everything: Framing the Film Pink Ribbons, Inc.
Choices: How I Live with ALS
Thoughts on Leadership—Listen Up, Nancy Brinker
Point Reyes
Changing the Culture of Health Care in a Consumer Society—Not So Easy
Whatever Happened to Previews of Coming Attractions in Health?
Susan Love: Time to Think before You Pink
Who Shall Live and Who Shall Die? A Yom Kippur Reflection
NBCC: The Promise, the Process, and the Problems
Winter Weather
What I Learned as a Volunteer
January 19, 2013
February 11, 2013
Thanks and Blessings
Afterword
Anne Lamott