26. “Daring to be Powerful”

Kathleen Kolb is a home care physical therapist, artist, and writer. She was diagnosed with Ductal Carcinoma in Situ (DCIS) in May of 2008 and began writing a blog about breast cancer about six months later called The Accidental Amazon. Kolb’s blog received the 2011 Royal Purple MAAM Award, in which her nominator wrote that, “The Queen of Snark is ‘informative, funny beyond words and just the most beautiful person, evah!’” Sure enough. Kathi Kolb’s motto: “A little skepticism is healthier than a lot of disillusionment.” Pink Ribbon Blues echoes the sentiment, and republished two of the Amazon’s essays: “Hubris for the Cure” about the Komen trademark feuds and “Whose Life Is It Anyway?” about the untidiness of breast cancer, the power and emptiness of symbolism, and the realities of living and dying with the pink ribbon disease. In “Daring to be Powerful” Kolb describes the influence of feminist author and activist Audre Lorde, and the legacy she left to other women who dare to be powerful.

Back when I was a young feminist, a nascent poet/writer/editor, a poetry performer long before such events were called slams, one of the women I admired hugely was Audre Lorde.  Her collection of essays, Sister Outsider, became one of my favorite references and touchstones.  Living in Boston, I had the great joy and privilege of seeing her perform on a number of occasions, at places like the fabulous Arlington Street Church, that Boston institution founded to exist as a hotbed of progressive thought, spirituality and social justice.  Indeed, it was in the basement coffeehouse of that esteemed building that I performed my own poetry.  I saw Audre upstairs, in the big, beautiful church itself, among a packed house of feminists, poets, writers and activists who, in the 1970′s and ’80′s, who were endeavoring to be loud and proud, and to redefine the experience of women.  Audre Lorde was already an icon on so many levels.  She was a woman, a black woman, a lesbian, a feminist, a gifted poet, a passionate activist.  She wrote and spoke out about racism, sexism, classism, homophobia and social inequality with enormous wisdom and eloquence.

And then Audre Lorde was diagnosed with breast cancer.  And as was her wont, she wrote a journal during her experience.  Published in 1980, The Cancer Journals was one of the first works of its kind.  Published four years after Betty Rollins’ ground-breaking book, First, You Cry, Lorde’s book examines the notion of cancer survival to consider the political implications of breast cancer and breast cancer surgery, analyzing the ways that prostheses and plastic surgery hide the real experience of breast cancer, disguising its widespread incidence and deadliness, while emphasizing the notion of trying to restore ourselves to some socially acceptable notion of “normal” femininity.

Here we are, some thirty years later, and breast cancer awareness seems to be smothered in pink.  Not only our identity as women, but the reality of our disease is muffled by myth, misinformation, and research priorities that still don’t adequately address the twin constants of incidence and mortality that have remained unchanged since Lorde wrote her journal.  Perhaps more than any other type of cancer, breast cancer challenges our social and personal notions of female identity.  Its treatment robs us of so many of the physical icons of feminity — our hair, our breasts, our female hormones, even sometimes our ovaries and wombs.  Meanwhile plastic surgeons offer reconstructive surgeries that can involve procedures often taking well over ten hours to perform, initiating a process that may take years to complete, so that we can have insensate tissue to replace part of what we’ve lost.  And after all that, breast cancer may still recur or metasticize, in the end robbing us of our lives.

Those of us who try to speak out about the crazy and unacceptable implications of all this may find ourselves accused of being negative, humorless harpies who focus too much wrath at the color pink and have nothing good to say about virtually any part of our current breast cancer awareness movement.  It’s difficult for people, whose intentions may be sincere, to be receptive to rethinking their cherished, comforting notions, to have someone suggest that their efforts may be misdirected or even futile.  We all need some measure of hope to exist.  But hope based on false assumptions does not ultimately change or improve the prognosis for women and men with breast cancer.

“If I didn’t define myself for myself, I would be crunched into other people’s fantasies for me and eaten alive.” — Audre Lorde

Just when I feel defeated, when I feel the message to redirect the pink behemoth of breast cancer awareness is simply not getting through to the people who need to hear it the most, I come upon someone like Tania Katan.  Her memoir, My One-night Stand With Cancer, is a funny and ruthlessly honest account of her own experience with breast cancer.  Today, a friend posted a link to Katan’s recent TED Talk, which I’ve posted below.  In it, she refers to a quote from Audre Lorde’s poem “A Litany for Survival”, from The Black Unicorn: Poems, as her inspiration and guide to speaking out about the reality of the disease.  If you’ve ever “run for the cure,” or been tempted to, or questioned the point of such an event, you’ll want to watch this video.

Decades ago, while I still felt imbued with youth, half-convinced of my immortality, I saw and heard Audre Lorde herself declaim the poem from which Tania Katan quotes.  It was a thunderously moving experience.  And I think a fitting way to end this post is to provide the entire text:

A Litany for Survival

For those of us who live at the shoreline
standing upon the constant edges of decision
crucial and alone
for those of us who cannot indulge
the passing dreams of choice
who love in doorways coming and going
in the hours between dawns
looking inward and outward
at once before and after
seeking a now that can breed
futures
like bread in our children’s mouths
so their dreams will not reflect
the death of ours:

For those of us
who were imprinted with fear
like a faint line in the center of our foreheads
learning to be afraid with our mother’s milk
for by this weapon
this illusion of some safety to be found
the heavy-footed hoped to silence us
For all of us
this instant and this triumph
We were never meant to survive.

And when the sun rises we are afraid
it might not remain
when the sun sets we are afraid
it might not rise in the morning
when our stomachs are full we are afraid
of indigestion
when our stomachs are empty we are afraid
we may never eat again
when we are loved we are afraid
love will vanish
when we are alone we are afraid
love will never return
and when we speak we are afraid
our words will not be heard
nor welcomed
but when we are silent
we are still afraid
So it is better to speak
remembering
we were never meant to survive.
– Audre Lorde

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3 comments to 26. “Daring to be Powerful”

  • From Ronnie: Lovely to hear from you Kathi. Very powerfully said and the next best thing to hearing from Audre Lorde herself. I feel jealous that you got to see her several times, but then, I couldn’t say for sure she was never in Liverpool – maybe I just wasn’t looking in the right places those days. But these days the walls of our house frequently reverberate to her words, particularly those last 8 lines of ‘A litany for Survival’. And every time, I well up with tears of rage.

  • Kathi – I love this piece. I loved reading about you as a young feminist and am SO in awe that you saw Audre in person (I only have a DVD). Audre’s reminders that ‘silence will not protect you’ are often what help me find the strength to express my anger. What would Audre Lorde say about the pink? Wow. That could be some blog post… in fact I think we’ve already written it. Best, Sarah

  • Wow. Thanks for the introduction to Audre; this is the first I’ve heard her, but I too feel the power in her words.

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* GAYLE IN THE MEDIA *

"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
Marie Claire

Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

Komen Pink Ribbons Raise Green and Questions USA Today

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** MORE RADIO INTERVIEWS **