27. March, Run, or Streak to a Different Drummer! Civil Disobedience at a Komen Race

The Susan G. Komen for the Cure tagline about “imagining a world without breast cancer” does not resonate with everyone. For those who will never finish treatment, and for whom the survival rate has barely budged in decades, the future is too close at hand. This is the scenario for the 150 to 250 thousand people living with breast cancer metastasis. What’s more, the future will continue to be bleak for this group if metastatic breast cancer continues to be the least funded area of research.

To raise awareness about the lack of progress in preventing breast cancer death from metastasis, a group of cancer rebels who think of themselves as the Komen Bandits wear specialized apparel to tell a different story. Alongside the uniform t-shirts, fun-loving spirit, and triumphant slogans that flood the typical Komen races, their questioning stance stands out as disobedient, almost lawless.

One woman with metastatic breast cancer wears a handmade tie-dyed tank top that strikes out the survivor language and demands funds for stage IV research: “Not surviving. Still Fighting. Fund stage IV research.” She says it is vital for people with metastatic breast cancer to no longer be “written off [as] test subjects…[when] we are the ones…dying at the same rate year after year.” Such words serve as civil disobedience against what has become an almost sacred institution.

Questioning the Pink Status Quo

People with and without metastasis have started to raise awareness about the breast cancer industry and Komen’s role in it by posing hard questions, taking bold steps, and breaking from social norms. Even those who have been hesitant to speak out in the past are now part of the intervention.

Lani Horn, who writes under the name ChemoBabe, acknowledges in “Komen has Crossed the Line” that in the past she intentionally avoided direct criticism of Komen because the races seem to provide a sense of community and symbolic power. She also knows women “who have felt transformed” by such events. However, she goes on to say that,

“While the unity may be 100% real, the purpose has become distorted. I feel that these women and the people who donate to them are being misled. I do not like to see people’s good intentions exploited….My outrage is simple and comes in three parts: linking cancer to a perfume, the weird beauty breast cancer connection, and the misleading use of the money.”

Horn is referring first to Komen’s troubling corporate fundraising partnerships, of which a recent fragrance venture is emblematic. Instead of raising funds, Komen’s Promise Me perfume has raised a stink. There’s an anti-pinkwashing letter-writing campaign asking Komen to recall the product because of hazardous ingredients.

Her second concern, the beauty connection, relates to prettying up the disease to make it palatable for entertaining public consumption while masking the complexities and difficult realities of the disease.

Third, Komen’s financials, and misleading use of the money as Horn puts it, are clearly outlined in a prior Pink Ribbon Blues essay, Tracking the Big “K.”

Despite these valid concerns about Komen, many people still feel dis-ease in calling attention to them.

In “Are We Really Racing for a Cure” Nancy Stordahl ask: “Why does it make me feel like I am a ‘bad/ungrateful cancer survivor’ for not feeling a debt of gratitude to the ‘wonderful’ organization behind this glamorized pink event?” After contemplation, she realizes that her discomfort “stems from the fact that all of this walking/racing, all of this pink, all of this feel-good effort in the name of breast cancer has done little to change the facts about the breast cancer epidemic.” She writes:

  • According to the National Cancer Institute (NCI), the incidence of breast cancer has fluctuated over the years with a general upward trend. Most recently, there was a drop in incidence due to reductions in the use of Hormone Replacement Therapy, but the incidence of breast cancer did not continue to go down after that. The chance of a woman developing breast cancer in her lifetime has increased from about 1 in 11 in 1975, to 1 in 8 today. Despite all the fundraising, there is little focus in the pink mainstream on finding out why.
  • In addition to scary rates of incidence, the number of deaths occurring daily from breast cancer has not significantly decreased. NCI data shows that on average the number of deaths per day declined from 119 in 1991 to 110 in 2010. At this rate, it would take a very long time to reduce mortality due to breast cancer.
  • Presently there is little knowledge about how to determine which breast cancers will spread and which will not. Even people diagnosed at lower stages can get metastatic breast cancer, and [it] continues to be lethal (responsible for at least 90% of breast cancer deaths).

Concerns about Komen’s role in pink culture and industry have been mounting for many years, along with increasing awareness that progress has stalled. The difference today is that more people are speaking out and taking steps to intervene while still actively supporting efforts to support the diagnosed and eradicate the disease.

Racing with a Different Message

“Every year I cringe when I hear about the Race for the Cure.  Do I do it? Do I not do it? Am I turning my back on people who might need me? Am I a sellout?”

Katie of the blog Uneasy Pink voices her concerns about how to support the breast cancer cause without fueling the industry Komen helped to create. She decided that she and her daughter would participate in a Komen Race for the Cure, but a bit differently. Instead of wearing the Komen t-shirt uniform that accompanies each registration, they stood out by wearing non-Komen t-shirts and asking that donations be made to other organizations. For Katie, groups like Breast Cancer Action and the National Breast Cancer Coalition are doing more to make a difference.

Katie explains her standpoint.

A couple of years ago, I raised money for it. Quite a bit of money, as I remember… I won’t raise money for them this year, or any other year until they change their practices.

But the bottom line for me is this… I was scared to death in 2008 [when I was diagnosed with breast cancer] and seeing all those women who had cancer too was important to me. Inspirational and moving. I feel like I need to pay that back, because who knows how many scared (and yes, naive) women will be there this year, looking for some sort of evidence that the hellish treatment is doable, and that life can be refashioned and reclaimed after breast cancer treatment.”

In a follow-up about the race, Katie said that when she first participated in Komen races several years ago she “didn’t know much about breast cancer or Komen…The festive atmosphere seemed like fun, like a big party. This year, it just seemed a little gross.”

Alica Staley of WEGO Health raised numerous concerns about Komen’s actions, also questioning the foundation’s excessive use of trademarks and legal actions over the phrase “for the cure.” Staley unapologetically writes:

“The backlash is here. The Komen Bandits are organizing. Count me in as a bandit. I’ll carry the torch for Joan, Jeannie, Susan, Martha, Mary, Karen, and Lisa. These women were dear friends that died from metastatic breast cancer. I’m asking [Komen] to take a leadership role in addressing the lack of progress made for those facing the metastatic aspects of this disease.

The once mighty Pink Ribbon used all these years to herald the importance of breast cancer awareness, is quickly becoming the poster child for cause marketing overload. Don’t make this your legacy and drag the rest of the breast cancer community down with you.”

Similarly, Amy from Her2 support.org writes:

“In a market-driven approach to solving public health problems, messages inevitably get distorted to serve the interests of the corporate sponsors. Sponsors want happy, celebratory, feel-good events and stories, so the mainstream version of “awareness” is false. Fewer women are going to get breast cancer than most people think, but far more women who do get it will die from it than most people realize.”

Civil Disobedience at a Komen Race

Setting the record straight to fix the pink ribbon system for the better is part of a growing movement, and it takes all kinds of communications and actions to make that happen. I don’t know if the most famous Komen Bandit thinks of herself in such terms, but Tania Katan is a Komen Bandit Extraordinaire. Her act of civil disobedience at a Komen race is a breach of social norms that not only disrupts taken for granted assumptions but gets people thinking about what could be gained if the culture were willing to get real about breast cancer. Imagine the scene:

Katan’s act of civil disobedience at a Komen race was a breach of social norms that not only disrupted taken for granted assumptions but got people thinking about what could be gained if the culture were willing to get real about breast cancer. Imagine the scene:

http://www.phoenixnewtimes.com/2005-10-06/calendar/breast-feet-forward/

On your mark. Get set. Go! At this moment Tania Katan throws off her t-shirt and runs topless, at high speed, exposing two mastectomy scars at a Komen Race for the Cure. After crossing the finish line, Tania feels empowered, strong, and like a survivor. Race participants clamor to hug this odd new super-hero and commend her for her bravery — what audacity to show something true and honest about breast cancer in a culture that tends to hide the ugly realities beneath a sea of pretty, pink paraphernalia and product placement. What was she thinking?

What was she thinking?

In an interview with the Phoenix New Times, Tania Katan explained:

“Slowly, people begin to notice me, my chest, sneaking peeks, tenderly avoiding eye contact. I see a woman tap another on the arm and gesture in my direction. I see a group of teenage boys who, under any other circumstance would be considered tough, look at my scars and soften. Here I am, strong, healthy, running, yet I bear the scars of a two-time breast-cancer survivor. It’s my belief that people will go home after the race and for the next week, month, year, bring up this image and talk about it.”

Katan’s exposure of a different breast cancer reality was enlightening and powerful. But when she went to the Komen Survivor’s Cafe at the end of the race, a Komen board member told her to put her shirt back on, or leave.

After a stunned moment, Katan sluggishly left the cafe. A group of interested teenage girls approached, asking a slew of questions.

“Is that what breast cancer looks like?”

“How did you get it?”

“My mother died a few months ago, that’s why I’m here.”

As they talked, Katan got a clear sense of why it is so important to speak the truth about breast cancer and show our communities who we really are.

The Bandits are paving the way.

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4 comments to 27. March, Run, or Streak to a Different Drummer!

  • Jen

    I’d say I am stunned that the board member asked Katan to leave, except I’m not. Nothing surprises me about that organization anymore. They could do so much good with all of that money and instead they are just destroying the month of October. I can’t believe anyone would believe in them after reading this story….

  • Gail

    I am not surprised to read this, I have always felt that the “pink ribbon” was just a way of making money, and not a symbol of true effort to cure. There are so many alternatives to the normal poisonous cancer approaches, but they are being shut down right and left because cancer treatment is a big money making industry, at the expense of women’s lives. I have never donated to this organization because I have never believed that they truly want to cure cancer, if they REALLY wanted to cure it, they would seek out any and ALL possibilities, not just chemo, radiation and the like.

  • Yes, yes, yes.

    Thank you for another incredible expose of what really happens in breast cancer, behind the pretty pink shirts.

    Susan

  • Holy crap! I got here from comments on a post by Susan Niebur / ToddlerPlanet. What was that board member thinking? That board member should’ve offered Katan a seat and gotten her lunch for her. And then she should’ve taken the opportunity to sit down and talk with her and figure out what is going on – what the issues that need discussing are.

To speak her truth, she needed to give her words and identity away, to a trusted poet and friend @stevedavenport breastcancerconsortium.net/ov…

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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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