FOR THE RECORD ...... I'M **STILL** PISSED OFF .... JUST SAYIN' ----------

I selected this post to be featured on my blog’s page at Breast Cancer Blogs.

Little more than a week ago, I was privileged to attend a screening of Pink Ribbons Inc.  It was my honor to speak on behalf of Breast Cancer Action.  It is no surprise to anyone who reads this blog that I am not happy with the status quo.  As last October approached, I was educated about Pink Ribbon Culture by some of the smartest women with whom I have ever communicated.  I joined the ranks of the disillusioned.

In the movie, we learn that the pink ribbon was not the genius of Estee Lauder or Komen or Avon.  It was a simple idea of a woman who was paying tribute to lost loved ones.  When she refused to sell her salmon ribbon, the color was changed and that's where the story begins.  The ribbon raised awareness.  The ribbon educated women about the necessity of mammography and early detection.  And then, the ribbon was "hijacked."  I can't steal someone else's genius observation and the word "hijacked" came from a tweet by the good folks at Breast Cancer Action.  Progress slowed to a snail's pace. Little has changed since we made those first great strides.

I do not hate the pink ribbon.  I supported that ribbon.  Blindly.  I do not consider myself a stupid consumer.  I know how to properly vet organizations before donating money.  There is a problem with the vetting process in the pink ribbon culture.  It's not all about Charity Navigator or Guidestar awarding its highest rating.  Somehow, this goes much deeper.  I despise the fact that I was duped.  I can't blame anyone but myself.  I CAN thank people like Gayle Sulik and the late Rachel Cheetham Moro for shining a light on the mess.  And, I can share what I've learned.

The pink ribbon is NOT regulated.  Awareness? Are we all aware, for example, that anyone can slap a pink ribbon on a product and never donate one penny to any organization?  That's a fact.  The ribbon is put on the packaging and in the fine print, it will say something like "supporting breast cancer awareness."  Other products donate a minuscule portion of the net proceeds (literally one cent in some cases).

With plenty of other products, the donation is capped once a certain amount of money is raised.  In simple chemobrain terms:  Ten dollars from this widget is being sent to Breast Cancer Charity.  The fine print?  Maximum contribution of $100.00 will be made by Smart Corporation to Breast Cancer Charity.  Thousands of widgets are produced with the pink ribbon.  After the first ten are sold, SmartAss Inc keeps all of the money.  No more donation to Breast Cancer Charity.

The technical name?  Cause marketing.  THIS PISSES ME OFF.  And it PISSES ME OFF because WE should be smarter.  We should be savvy consumers.  Instead, we are The Brand.  We are marketable commodities.  We are profit margins.  OUR illnesses add to someone else's bottom line.

But, many of us do not know this.  I didn't.  And now I do.  And I open my mouth because if someone is going to slap a pink ribbon on something, we should demand full and complete transparency.  The answers to three key questions should be readily available.

• How much money from this purchase is being donated to a charitable organization (and is there a cap)?
• What organization is receiving the donation?
• How does that organization spend their donor dollars? (Lumping a mess of stuff under the heading of "programs" is NOT an acceptable explanation for me, either.  I want details)

We have strayed far.  We buy anything in the name of The Cause.  The pink ribbon is a tangled mess.  It took twenty five years to create this mess and it is not going to change overnight.  Those of us who ARE aware should not be standing on the sidelines and watch as others (often unknowingly) continue to buy into this pervasive pink culture.  If we are not part of the solution, we are part of the problem.

On Monday, I offended someone with my words.  It started with an anonymous comment:  "OMG get a life lady."  I thought my response was polite and honest and worded quite kindly.  I don't want another 25 years to pass with the same lack of progress.  Meaningful progress would be a great start.  My response apparently opened the door for further commentary by a nameless person on this blog.

Admonishing me to "get a life" wasn't enough.  I received a rather long response to my disappointment over the lack of meaningful progress and over my concern for my daughter.  It felt rather mean-spirited and some of my blog buddies jumped to my defense.  (And thank you, each and every one of you who left some words of encouragement...... )  One of them advised me to just step aside. I did.  But I'm not the type to sit with my mouth shut for too long when I'm attacked personally.

The comment became personal when I read phrases directed solely at me: "take a breath," "stop the negativity," "focus on the positive," "stop being so pissed off," and best of all, "accept this as a fact of life."  The words are a bit strong and clearly there is a sense of urgency, a deep need to hang on to that ribbon for dear life while 40,000 women are dying each year, every year.  Their deaths, in my opinion, are the direct result of the grip on that ribbon.

I don't take direction from anyone.  There isn't a soul on the planet who is going to tell me to stop doing anything.  Ever.  If my actions are coming from a place of truly understanding an issue and my actions are an attempt to make the slightest difference.... if my words enlighten just ONE person, that's good enough for me.  In no particular order, what follows are my own opinions and feelings about some of what was expressed.  The tone directed at me is quite authoritative, accusatory, demeaning and/or defensive.  I hope to refrain from doing the same in expressing my feelings.

While I listen with an open mind to all opinions, I doubt the person who left the comment has ever so much as given a glance to any other points of view considering the tone and tenor of the remarks.  And again, I call bullshit on the whole thing.  Yes, the purpose of the pink ribbon has long been achieved.  It has also alienated the breast cancer patients from the cancer community at large.  Those with other types of cancer are resentful.  I've heard that resentment expressed time and again in a number of different forums, across several platforms, from many different people.  I listen when others speak.  I empathize.  And, I happen to agree with their sentiment.  They are not wrong.

Why do we care if others are capitalizing on our disease?  Frankly, I don't care what corporations are doing.  My goal is to make noise and make sure my position is clear.  I resent anyone capitalizing on ME.  On my cancer diagnosis.  On my altered body.  On the emotional toll that accompanies a cancer diagnosis.  I RESENT it.  And I don't have to sit in silence.  I would hope those who buy pink ribbon products would consider getting answers to those three questions I mentioned earlier.

I too have better things to worry about and bigger problems to solve.  For starters, I am bothered by the billions of dollars being thrown at a situation as we continue to accept what I would call on the street, "piss poor results."  It's called throwing good money after bad.  Or bad money after good.  Or more money for nothing.  Women are dying.  Personal friends.  They are "the problems" that I'd like to solve.  The fact that my daughter is a previvor, not because of BRCA status, but because of a strong enough "history".... another problem I'd like to solve.  I'd like to see research being done to SOLVE the problem of breast cancer.  To prevent the disease.

I am not interested in the opinion of anyone who is telling me I should "take a deep breath" and I "must accept that money comes from business - whether we like it or not."  Survival of any business in a capitalistic society is consumer driven.  WE are the consumers.  Ergo, if we do not spend our money on products that are doing little or nothing to stop the breast cancer pandemic, those predator businesses can no longer profit from MY disease.

All the energy I spend fighting is bad for "our cause."  This is not MY cause.  My cause is research.  My cause is prevention. My cause is stopping the spread of disease. My cause is understanding why 20% of early breast cancers WILL recur within the first TEN years. My cause is figuring out how to STOP that.  The pink ribbon is not my cause.  Negativity, yes. Resentment, absolutely.  Did your mother stand beside you, crying, when you were told, "you have invasive breast cancer." ?????  I don't know who felt worse.  I think she did.  I should just accept this?  No, I will not accept any of it.  I do not want to be in that situation with my own daughter.

Stop the negativity and focus on positive issues?  Stop being so pissed off and accept this as a fact of life?  There is nothing positive about the status of cancer research in general.  It's been forty years since the "war on cancer" was declared. Damn straight I am pissed off and NO, I will not accept this as a fact of life because, quite frankly, it's bullshit.  A fact of life?  To refer to the pink ribbon as a fact of life is offensive on more levels than I can possibly express.  

Slavery was a fact of life until people began to make noise.  Women not having the right to vote was a fact of life less than one hundred years ago in this land of the free UNTIL women began to make noise.  To those of us who have been burned to our core by this disease, watching loved ones die, watching the quality of the lives of others so drastically altered, having to make choices to "slash, burn and poison" which are the exact same choices we had when the Pink Ribbon came along to create such awareness, we are choosing to make noise because NO, we do not accept this as a fact of life.  I can only speak for myself when I say that I will NEVER accept this as a fact of life.  At least not in its present direction.

Oh, as for explaining why this is such a horrible event before I start ranting?  I didn't think an explanation was necessary. The ad speaks for itself.  Cause marketing to the cause marketers?  How many levels of people need to make money before someone steps in and says, ENOUGH.  I've had enough.  My friends have had enough.  MANY of us have had enough.  I am not attacking an organization or a person although there are plenty from which to choose.  I'm just trying to raise awareness.  The right kind of awareness.  And it IS just that simple.

To summarize, do not tell me to what I must and must not accept.  Do not tell me to stop being pissed off.  Complacency got us here.  Pissed off is the way out.  Do NOT imply on any level that this is "our cause"  simply because I am a woman with breast cancer.  I should just follow the masses like a lamb to a slaughter house.  No thank you.  The noise is making for Bad Press?  Seriously??  The truth stands on its own merit.  If that's bad press, too damn bad.

We, those of us who have looked beyond the ribbon, tried asking nicely. We tried to dispel the myths and expose the truth. Unvarnished. Uncut. Unspun. We were ignored.  We are accused of being miscreants.  We played nice and the other side continued to play dirty.  Twist words to suit "the cause," skew statistics to bolster "the cause."  Unfortunately, there would be no dialogue.  Instead of working together for "the cause," we were shunned.  Ironic, don't you think?  I mean really, WE are The Cause.  Without US, there is No Cause.  And We are Shunned.  Disgraceful is a more appropriate description.

I didn't start from a position of being brash and brazen.  I didn't go from zero to pissed off.  I sat on the sidelines.  I watched from a distance.  I realized things were getting worse.  I saw how trying to work toward some sort of resolution like reasonable, respectful adults didn't move us one inch closer.  I have tons of patience.  I will try every conceivable approach when there are oppositional points of view.  I do NOT have a short fuse.  A simple course correction might resolve this entire dust up.  First, however, both sides have to be heard.

Being ignored constantly and continuously finally got to me.  And I got "pissed off."  And, I will stop being "pissed off" when others simply acknowledge the mere existence of some impropriety.  That would be a great place to start.  That could bring some effective and meaningful change.  Everyone wins.  How is that so hard to understand?  Boggles my mind.  And, pisses me off.....