Friday, September 30, 2011

Upending Pink

 "Having breast cancer is massive amounts of no fun." -- Molly Ivins



Graphic by Kathi Kolb
It's time to upend the ribbon and turn the pink upside down.

October has made me uneasy for a long time.

If you put four women with breast cancer in a circle more likely than not one of them will develop and die of incurable, metastatic disease. Or from the attempt to wrestle devilish cancer cells into a chronic condition, like diabetes or heart disease. But cancer is not like diabetes or heart disease for one obvious reason: chemotherapy, as a way of life, ultimately is not sustainable.

For the other three of us from the circle, the treatment that brought about remission (does anyone say cure?) can leave side-effects that are physical and psychic, not to mention financial. In the past thirteen years I have learned to deal with all but one. The repeated distress of losing that one woman from our circle, the one whose cancer cells were simply uncontrollable, is like losing a limb. Over and over again.

In the meantime, medical sociologists like Gayle Sulik, PhD, in her book Pink Ribbon Blues and sharply observant bloggers like Rachel of The Cancer Culture Chronicles keep raising the curtain on 'pink profiteers' and the 'pinkification' of a difficult disease into something far from the reality most women experience. Money that could be used to fund meaningful research or even funds to directly help affected women is instead diverted into piles of pink "stuff" with the pennies (if that) from those purchases ending up God knows where.

"Breast cancer has made a lot of people very wealthy," Lea Goldman writes in her excellent article, "The Big Business of Breast Cancer." in Marie Claire.  Here's she's not razzing on the health industry but the undersided tactics of several large, national breast cancer charities that employ telemarketing services to solicit your funds. From those funds, these "philanthropists" pay themselves handsomely, and oops, sometimes "forget" to make those donations made to the cause they claim to help.

Read Goldman's article side by side with USA Today writer Liz Szabo's "Pink ribbon marketing brings mixed emotions poll finds.," developed from questions added on to an exclusive USAToday/Gallup Poll about President Obama. What stuck out like a sore thumb: more than 80% of the sample said that they had purchased a pink ribbon product.


So is this what breast cancer - or any kind of cancer - awareness means to the majority of Americans now? Purchasing a product?  What happened to modifying risk factors that can be addressed or helping assure that underserved populations have the same care that those with insurance do? Isn't that part of awareness, too? Without additional surveys and questions directed specifically at the link between the two (and other factors) we can't know for sure.  But I'm not sure that would be far off the mark.

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Starting Monday "UPENDING PINK" October on #BCSM with Gayle Sulik, PhD, at 9 PM ET.  Please join the conversation.

14 comments:

BreastCancerSisterhood.com said...

Jody,
Liz Szabo quoted me in this USAToday article: "It's become almost un-American not to support 'pink awareness, but pink ribbons have become more like background noise than the original cry for help. It seems like the essence of what's important about pink has gotten lost, or been perverted for financial gain.

So glad you're doing this next #BCSM on this topic. I hope to be able to bring something meaningful to the breast cancer table as well. Will keep you posted.

XOXOXO,
Brenda

carmen2u said...

I am beginning to think a grassroots campaign of simple contracts law is in order. Anytime someone cashes a check in exchange for a service, they have sealed that contract. What if the next time you sent in a check to your favorite breast cancer charity you wrote in the memo filed "80% of these funds must go toward research"? The act of cashing that check obligates the recipient to fulfill that contract. Small act, but big consequences. Technically, if the recipient fails to fulfill the contract, then breach has occurred. I hope that we all exercise our own "pink power" to really make the advances we need in conquering cancer.

CancerCultureChronicles said...

It Would be interesting to see a serious poll taken on what people actually do know about breast cancer, including metastatic breast cancer. My bet is the results would show not much knowledge at all. Despite the pink awareness/education and the associated billions poured into the juggernaut.

The Dirty Pink Underbelly said...

My favorite point in this article - "But cancer is not like diabetes or heart disease for one obvious reason: chemotherapy, as a way of life, ultimately is not sustainable."

Push for metastatic breast cancer to be considered a "chronic" disease has rubbed me wrong from the beginning.

Julie Goodale said...

Excellent post. I may be rehearsing then, but if not I'll try to stop in to the conversation on Monday.

How did we get from BC being a disease that no one spoke of to this? Pink fluff & it's just a momentary thing - I'll just get my hair done, put on some makeup, & be on my way. Where is reality?

Jody said...

Great comments!

Carmen, you make an excellent point. It also occurred to me that donors should check an organization's board make-up...if it lacks advocates or is only made up of attorneys, investors, or others who somehow benefit from the charity and not the other way around? Another red flag goes up!

Thanks to all of you:) Excellent perspectives all the way around.

jms

Jody said...

Pink Underbelly,

Chronic isn't the right word, is it?

Also, are you on Twitter in addition to FB? I see you're in Houston:) Nice to meet you!

Hugs,
Jody

Beth L. Gainer said...

Outstanding posting, Jody! I also feel uneasy about Pinktober. I feel like becoming a hermit, just to avoid seeing all the pink stuff on TV and in the stores.

I just posted on my blog a story of a good friend of mine who died of metastatic breast cancer. I feel that we should begin the month talking about this, not designate only one day for mets.
BTW, I plan to tune into #BCSM on Monday.

pamparker said...

I agree wholeheartedly. I recently posted about my discomfort w/the whole Pink onslaught -- titled "Puking Pink." Thanks for all you're doing! (Note - the open id isn't accepting my new web address, which is http://pamwrites.net, so I will put my old wordpress address there.)

Beth L. Gainer said...

Jody,

THANK YOU for an excellent post on the culture of breast cancer. Love the upside down ribbon done by Kathi.

I plan to be part of #BCSM tonight. It's an excellent topic.

Thank you for this posting and sharing your voice in the world.

Beth L. Gainer said...

Hey,

I realized I left two comments: They are both true!

The Accidental Amazon said...

I am glad that finally some attention is being brought to the facile, pointless, disingenuousness of pink merchandising. About time. Symbols have their place, but never has a symbol become so wrong-headed in so many ways as the pink ribbon.

Glad to contribute in my own small way to turning it on its head.
xxxooo

sue ingram said...

So money and politics corrupt in the end and we all lose out from what was originally a very well intended purpose. Imagine how beautiful the whole pink ribbon concept would be by now if it hadn't turned into a money-making opportunity?
I would like to donate some of our non-toxic, non-chemical beautiful sunscreen to a cancer focussed organisation. Perhaps you have a recommendation?

amandaanderson1158 said...

very nice discussion it is very useful for me. thanks a lot

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