So Much to Be Done: The Writings of Breast Cancer Activist Barbara Brenner

294 Pages·2016·1.092 MB·English

by  Barbara Sjoholm, (ed.)

SO MUCH TO BE DONE
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So Much to Be Done
THE WRITINGS OF BREAST CANCER
ACTIVIST BARBARA BRENNER
BARBARA BRENNER
EDITED BY BARBARA SJOHOLM
INTRODUCTION BY RACHEL MORELLO- FROSCH
AFTERWORD BY ANNE LAMOTT
University of Minnesota Press
Minneapolis • London
Writing in Part I was previously published in The Source, a newsletter of Breast
Cancer Action. Writing in Part II previously appeared in Healthy Barbs at http://
barbarabrenner.net/ or on Barbara Brenner’s Caring Bridge website at http://
www.caringbridge.org/visit/barbarabrenner.
“Gott spricht zu jedem . . . / God speaks to each of us . . .” from Rainer Maria Rilke,
Rilke’s Book of Hours: Love Poems to God, translated by Anita Barrows and Joanna Macy
(New York: Riverhead, 1996), 88. Translation copyright 1996 by Anita Barrows
and Joanna Macy. Reprinted by permission of the translators and of Riverhead, an
imprint of Penguin Publishing Group, a division of Penguin Random House LLC.
“Dance Me to the End of Love,” by Leonard Cohen, excerpted from Stranger Music:
Selected Poems and Songs. Copyright 1993 by Leonard Cohen. Reprinted by permis-
sion of McClelland and Stewart, a division of Penguin Random House Canada
Limited.
“Mi Shebeirach” music copyright 1989 by The Deborah Lynn Friedman Trust,
Dated October 19, 1994; text by Deborah Friedman and Drorah Setel (based on
liturgy).
Copyright 2016 by Suzanne Lampert
Introduction and Afterword copyright 2016 by the Regents of the University of
Minnesota
All rights reserved. No part of this publication may be reproduced, stored in a
retrieval system, or transmitted, in any form or by any means, electronic,
mechanical, photocopying, recording, or otherwise, without the prior written
permission of the publisher.
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ISBN 978-0-8166-9943-8 (hc) | ISBN 978-0-8166-9944-5 (pb)
A Cataloging-in-Publication record is available from the Library of Congress.
Printed in the United States of America on acid- free paper
The University of Minnesota is an equal-o pportunity educator and employer.
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Contents
A PortrAIt of BArBArA BreNNer 1
Barbara Sjoholm
INtroductIoN Barbara Brenner, Breast Cancer Action,
and the Birth of a Politicized Breast Cancer Movement 13
Rachel Morello- Frosch
PArt I. BuIldINg A MoveMeNt, 1995– 2010 27
Hope, Politics, and Living with Breast Cancer 33
Loss and Inspiration 36
Let Them Lick Stamps 40
Fiddling While Rome Burns: The Latest Mammogram
Controversy 43
Reflections on a Handmaid’s Tale 48
Words Matter 51
My Sister’s Keeper 54
Educate, Agitate, Organize— Now! 57
One Pill Makes You Smaller . . . 59
Thinking Out Loud: Toward a New Research Strategy 63
Rolling the Dice 66
Respecting the Past, Creating the Future 69
Making Choices 73
Living on the Edge 77
Breast Cancer Treatment: Promise versus Reality 81
Exercise Your Mind 85
The Crazy Days of Autumn 89
Lessons from Long Island 93
Waging War, Making Connections 97
Solving the Breast Cancer Puzzle: Advancing the
Research Revolution 99
Forests and Trees: Reflections on Pink Bracelets and
Narrow Visions 102
Fifteen Years of Activism: Standing on Many Shoulders 104
Era of Hope, Hype, or Hoax: Is It Time for Change in the
DoD Breast Cancer Research Program? 107
Meaningful Results: Getting What We Need from Science 111
BCA’s Survey on Aromatase Inhibitors: Meeting the
Needs of Patients 115
Moving beyond the Personal in Environmental Health 117
Putting Patients First: The Need for Better Standards
at the FDA 119
The Organic Process of Activism: Think Before You Pink®,
Then and Now 123
Breast Cancer Awareness Month: The Present Looks
like the Past 126
So Much to Celebrate, So Much to Be Done 128
PArt II. thoughtS oN dyINg ANd lIvINg, 2011– 2013 133
Don’t Ask Me How I Am 139
Patient? Who’s Patient? 141
Don’t Make Promises You Can’t Keep— Especially in Health 144
Isn’t It Time to Change the Message? 147
Uncertainty, a Teaching for Rosh Hashanah 5771 150
A New Name 153
Passover 156
There’s That Person with . . . 159
The Obligation of Privilege 162
Can and Can’t List 166
That’s Why They Call Them “Trials” 168
People’s Lives as the Endpoints of Medical Research—
Now There’s a Nifty Idea 171
Understanding Health Numbers: Not Easy, but Important 174
Having a Voice, Communicating, and Somewhere
in Between 179
Walk for Your Health, but It Won’t Help Anyone Else’s,
Much 182
Thoughts on Dying and Living 184
How Do You Spell Chutzpah? K- o- m- e- n 187
Drug Development and Access: Time to Act like Lives
Depend on It 191
Science by Press Release— Not Good News for Patients 194
Health Activism— Not for the Faint of Heart 196
Pink Ribbons and Lou Gehrig: Time to Bury
Useless Symbols 199
Mi Shebeirach: Thoughts on Illness and Blessing 203
Is October over Yet? 209
Labyrinth 214
IOM Report on Breast Cancer and the Environment:
What Komen’s One Million Dollars Bought 216
Gloves Off: What the Fuck, Komen? 221
Yosemite 226
Smith College Medal 229
Context Is Everything: Framing the Film Pink Ribbons, Inc. 232
Choices: How I Live with ALS 238
Thoughts on Leadership— Listen Up, Nancy Brinker 242
Point Reyes 246
Changing the Culture of Health Care in a Consumer
Society— Not So Easy 249
Whatever Happened to Previews of Coming Attractions
in Health? 252
Susan Love: Time to Think before You Pink 255
Who Shall Live and Who Shall Die? A Yom Kippur
Reflection 258
NBCC: The Promise, the Process, and the Problems 263
Winter Weather 266
What I Learned as a Volunteer 268
January 19, 2013 272
February 11, 2013 274
Thanks and Blessings 276
Afterword 279
Anne Lamott
A Portrait of Barbara Brenner
Barbara Sjoholm
Most breast cancer activists will have heard of Barbara Brenner, and
many will have seen her as a participant in the documentary Pink
Ribbons, Inc., which skewered corporate pinkwashing and other hy-
pocrisies in the multimillion- dollar breast cancer industry. There are
those who read her columns in Breast Cancer Action’s newsletters or
reached out to her personally for advice and help. Many followed her
blog, Healthy Barbs, for information and back talk on breast cancer
and other health issues or drew comfort and strength from her posts
about her struggles with ALS, the disease that eventually took her life
in 2013. But others will be encountering Barbara Brenner for the first
time in this selection of writings from her editorial columns and blog
posts. A self- described “hell- raiser,” Barbara Brenner was for fifteen
years the executive director of the San Francisco– based organization
Breast Cancer Action, which she described with relish as “the bad
girls of breast cancer.”
In Barbara Brenner’s mind a hell- raiser was a question- asker, an
agent of change, and a dogged and courageous pursuer of truth, all el-
ements of her own personality that she managed to combine with hu-
mor and great energy. Readers of this selection of Barbara’s columns
and blog posts will have the opportunity to experience directly just
what made Barbara such a galvanizing and sometimes controversial
figure in the world of breast cancer research and health activism. As
one of her friends and colleagues, Peggy Orenstein, wrote: “Barbara
was the person who most influenced my own thinking and writing
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