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February 05, 2012

Stunned

might describe how I have been feeling the past few days since I penned this post.  As some of you might recall, I was a bit hesitant about publishing.  I worried about backlash in a variety of respects and in hindsight, that was, at best, silly.

If you scroll to the bottom of the previous post, you will see 38 respectful and thoughtful comments. They are in addition to the overwhelming amount of positive feedback that I received on my Facebook page.  Now this begs the question:  why on earth did I wait so long to say anything?

I honestly can't say.  Perhaps I felt guilty that I would somehow hurt someone's feelings and I know I was worried about stirring up a political debate.  Either way, while I commented on others' blogs, joined various anti-Komen FB pages, and followed their Tweets, I could not bring myself to post on the matter, until Thursday.  Might I just note how much better I feel finally saying something?

I feel, in a sense, as though I have come out of a closet of sorts.  I have had anti-Komen feelings for years, but this latest move brought everything to a forefront for me.  I cannot sit idly by anymore and allow people to believe that this giant corporation has my best interests (or anyone else's, for that matter) at heart.  

Now you might be wondering if the 'reversal' of their decision will affect my beliefs in any way.  

Absolutely not.

As Kathi at the Accidental Amazon notes, this is just the "tip of the pink iceberg" and does not mean anything has changed.  I did not trust them before and it is clear their leadership is confused about direction.  A company that is that large needs to be focused, not muddying the waters by making one quick (and poor) decision, then completely reversing two days later.  Instead of solidifying their following, I think they now have simply earned more mistrust no matter how one looks the situation.  

I think this issue has caused many to scrutinize this 'charity' and hopefully direct their money elsewhere. As one commenter mentioned, a good place to start is Charity Navigator, however, please use the site carefully.  Yes, Komen is rated as a 4 star charity, but that does not mean they are accomplishing the goals their donors believe them to be.  Look at the reviews from those who have dealt with them in one way or another.

When I checked the site on Thursday, Komen had approximately 400 reviews.  They now have 615 reviews with an average score of 1.3.  The highest score they can receive per review is 5 stars and the lowest would be 1.  They have a score of 1.3 from those who are donating to them and those they are purportedly helping.  If that isn't a great indication of how they have lost their way, what is? If you want personal stories, read this post from a fellow blogger.  

Now, one might wonder if blogging will change at all for me.  No.  I'm still going to keep the chirpy updates and, of course, lots of weekly photos of LG and the Sissas.  However, I will also post on this topic when I feel the need.  I can't ignore the fact that the pink ribbon identity does so much more harm than good.  

In fact, I am very ambivalent in my feelings about this upcoming film (thank you to the commenters who linked to it!):  Pink Ribbons, Inc.  On one hand, I think a documentary like this is long overdue.  On the other hand, I'm not sure if I'm ready to see it.  I do have time to decide, though, as it is not due to be released in the U.S. until April.

We are aware of breast cancer, we are MORE than aware.  What we need is actual action, not just massive amounts of fundraising that do not affect the actual individual suffering or recovering from the disease.  We also need to take back our lives.  I know the less pink I see, the more normal I feel.

Remember, we ALL have had to deal with something in our lifetime.  It may another type of cancer, recovery from an accident, a genetic disorder, the list goes on and on.  We need to support each other in all of our fights and struggles, not just one.  No matter where you choose to send your money, do not forget to research the organization and ask  before you send in your check.   A few questions might be:

  • Is the charity actually meeting the needs of those it is supposedly serving?
  • Are they taking advantage of fundraising that is cost-efficient?
  • Do executive salaries appear to be more in-line with a charity or with a for-profit corporation?
  • Are you receiving rewards for your fundraising efforts that you don't need or want?  
  • When you contact the charity, are you actually able to speak to someone who can give you clear-cut answers or do you feel you get the run-around each time you call?
  • Can you stop by and see the charity in action?  This is not always possible, but for some is a great way to get a feel for the way it is run. 
  • Are you able to give constructive criticism, and, if so, how does the organization respond?

I have been following several blogs since my diagnosis in October of 2010 and, in fact, their existence gave me the courage to click publish the other day.  If you are interested in reading more blogs that have critiqued Komen in the past few days, please click over to any of the above that I have mentioned and/or the following listed below.  Remember that this is just a small sampling and each blog has many links of its own to peruse.  :

I think, if nothing else, this will confirm that the issues with Komen have existed for a long time. Hopefully, now they will see the light and either work harder towards their real goal.  Perhaps, even more desirable, they will remove themselves from the charitable organization arena permanently and allow those who can do better thrive in their stead.

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I agree completely about not being impressed by the reversal - it's less about doing the right thing and more about appeasing the masses. It still feels political. And PP raised $3 million in the meantime - more than enough to supplement the Komen grants. Thanks for your words.

Like I said earlier, love this post and the fact that you're informing so many of us who were just clueless! Now, I'm going to go drink some prosecco that does NOT have that lame-o pink label on it! :)

Good job on your Komen posts. It's never easy to criticize our heroes. It's gut wrenching, and I'm not sure it's something you ever get comfortable with.

Brenda

Yay you!

Jen,
You proved a theory I had bouncing around in my brain. I always figured there were a good many women who were not sure if speaking out was the right thing. I am SO glad you shared your thoughts. We need to follow the words of Mahatma Gandhi:
"Be the change you want to see in the world"
And in keeping with that tone, you already incorporated this one into the core of your being....
“The best way to find yourself is to lose yourself in the service of others."
I am honored to count you among my friends.

AnneMarie


Thank YOU! ~Jen

Never did like all that contrived "pink" stuff from Komen. More marketing than making a difference. Good for you for saying what many have believed for quite some time. LOVED your post!

Thanks for this inspiring and informative post. I am much impressed reading it.

I'm a guy. I've seen a lot of parallels between how we used to talk about disabled people and how we still talk about patients with cancer like yourself.

There used to be, and still are, "good" disabilities, like polio and spinal injuries such as the late Christopher Reeves suffered. People with those sort of conditions are heroic and positive and they use their illness to teach themselves and others Profound Things About Life.

If you have cerebral palsy or a condition that doesn't have a publicist, well, you're not so well off.

There are, by many people's lights, unfortunately, "good" cancers and "bad" cancers. It's a horrifying concept. But breast cancer is "good" because the patient didn't do anything to deserve it. Lung cancer, on the other hand, or even just plain colon cancer, well, you must have not taken care of yourself!

And whatever condition you are diagnosed with, if you don't have a positive attitude, you secretly want to suffer! If you don't have your own publicist, god help you, how will you ever get sympathy?

18 years ago, I spent the first day of my mom's last two weeks on Earth walking into her hospital room. She'd had colon cancer three years before. Now her hip was infected.

It's like a abscessed tooth.

But much much worse.

I will swear to this day as I walked down the hospital corridors through four buildings to hers, that I heard her screaming almost as soon as I passed the front desk.

Cancer is not uplifting or dignified and it did not teach either of us something important about life.

A few years ago, my local weekly printed its edition in pink. Pink! Of course, this was to commemorate SGK and those noble breast cancer victims.

I am a male and could not possibly comment on "feminist" issues like breast cancer, though I well know it is not feminist but humanist and affects us all. But I had to blog it too: https://salemmassblog.blogspot.com/2009/10/not-thinking-pink-sentimentalizing.html

Thanks for writing. I think a lot of people are now catching on. You should not have to star in a disease-of-the-week movie to get health care.

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