Sunday, February 26, 2012

Komen - I Still Don't Know Where I Stand

I am still struggling with my thoughts on the whole Komen problem and whether I will walk this year for them.  I found the following blog post, from Kristen, a fellow 3-Day Walker, to be incredibly well researched, backed up and I definitely learned some things from it.  If you need background on what's been happening, facts and information, start here before you go on to my post below:

Susan G Komen for the Cure - My Thoughts by Kristen Cincotta

My post is actually a letter I just emailed to the Project Manager for the National 3-Day who called me last week after I sent an email complaining about the fact that I received a survey from the National Komen organization and then couldn't take it because I was disqualified from giving my opinions after inputting a few demographic pieces of information about myself.  I felt like my voice didn't matter to them.  His call has helped with that.

It is far more about my emotions regarding the events.
Thank you so much for taking the time to call me on Thursday and giving me the opportunity to have my voice heard.  I'm still feeling pretty upset with the larger Komen organization for disqualifying me from the survey they sent out.

A little background on me.  My mother is a 10 year breast cancer survivor.  I got invovled in the 3-Day in honor of her and because I wanted to make a difference and show my children (an eight year old son and a five year old daughter) that you can make change happen if you're willing to go out and do things to see that it does happen.  I also wanted to do something that would potentially lower the risk of my kids ever having to face breast cancer themselves or face it in a loved one.  I walked in the San Diego 3-Day in 2010 and 2011, I also walked in the Los Angeles and Orange County Race for the Cure in 2011.  I have personally raised $7,750 for those events and convinced two other people to walk the 3-Day and one other person to join me at a Race for the Cure.  Including what those friends raised, I am responsible for bringing well over $12,500 to the 3-Day and those 2 affiliates in just 2 years.  I have a hat with 43 ribbons with the names of 42 women and one man who have battled breast cancer and won, or lost their battle with breast cancer.  I am connected to those people through my donors and friends and family.  I walked for all of them and the countless other families touched by this disease.

My initial feeling when the news hit was great disappointment, but I felt like it wouldn't affect my wanting to walk this year. I definitely thought they'd made a mistake in defunding Planned Parenthood and I wasn't happy about it. However, as no word came from Komen, the message got shaped by others and I watched the ire on Twitter and Facebook grow, I began to wonder if I still wanted to affiliate myself with Komen.  I didn't jump to any conclusions though as I am a wait-and-see-don't-judge-until-you-have-more-facts type of person.  At first I found it hard to believe that they had actually targeted Planned Parenthood as an organizaiton that they wanted to de-fund.  Then I learned about Karen Handel and her very anti-Planned Parenthood stance.  It seemed a bit too coincidental that this person joins the board and a relatively short time later, Komen's relationship with Planned Parenthood is ending.  I know the Komen organization's official line at the time was that this was never about Planned Parenthood, but I've also read articles quoting insiders who say the board has been actively looking for ways to distance themselves from Planned Parenthood for a while and that this move was *all* about that.

My heart was breaking as all of this went on.  I am passionate about this cause and about wanting to find a cure.  I believed that Komen was one of the organizations out there that were doing great things with the money they brought in.  At the same time, I also believe strongly in the services that Planned Parenthood provides to women and men who might not have any other means of getting those services.  However, within a few days, as Komen tried desperately to shape their message, for me it had gone beyond and was no longer about whether breast health services at Planned Parenthood were being funded by Komen.  Komen kept changing it's message.  They claimed Handel had nothing to do with it, that politics had nothing to do with it.  The more I dug, the more it looked like none of that was true.  I felt like I'd been betrayed and lied to by someone I cared deeply about.  I love the 3-Day event.  I love the physical challenge combined with making a difference in a cause I believe in, combined with a long weekend of being surrounded by fabulous people.  But I feel like I've been shown a "political agenda" side of Komen that has no place in the work I thought they were doing.  It makes me question everything I know about this organization.

The decision to reverse their stance and continue funding Planned Parenthood's breast health services, followed by the resignation of Karen Handel happened and I felt that this was the right thing for the Komen organization to do.  But the feelings of betrayal were still there.  In essence, it was the idea that Komen was no longer this beautiful "can do no wrong, most-trusted non-profit" to me anymore.  There has not been an apology from them that has owned up to all that happened and all the mistakes they have made.  Their statements have been finely worded, but mostly have involved asking us to put the focus back on their "mission" and to "move on".  It's almost like they are saying, "Pay no attention to the man behind the curtain" (to quote The Wizard of Oz).  Unfortunately, they were the ones who drew attention to "the man behind the curtain" (i.e. the fact that they are making decisions based on political leanings) and some of us need them to resolve that, ackknowledge it and not just have it ignored.

Things died down some, and I still felt tortured by the "should I walk?" question.  Then the survey happened.  I don't know what the survey was about because I was one of the people who was sent an invitation to take it, and then disqualified after having answered a few demographic questions.  It was like a slap in the face.  When I got the invitation, I was highly interested in seeing what they were going to ask.  When I was disqualified it felt like Komen basically told me that all the work I've done for their organization was not enough of a contribution to have my voice heard because I didn't meet some random demographic criteria (by the way, I'm VERY curious about what demographic fact about me actually disqualified me).  It was yet another huge blunder on their part in communicating with the very people who support them.  Number one, the voice of the entire demographic of their supporters should be important to them, but if they really wanted to look more closely at a particular subset, you still collect data from everyone and then cull that subset's data after the fact.  There would have been a lot fewer hurt feelings had they done that.

Getting your phone call and being asked to share my thoughts and feelings has helped alleviate the feeling that my voice is not being heard, but knowing you are affiliated with the 3-Day, and knowing all of these mistakes were made by the larger organization still makes me feel like the larger organization is not necessarily something I want to support.

The "should I walk?" question thought process revolves around four main points for me:

1) I don't "feel good" about Komen right now.  Do I really have the energy to fundraise and train when my heart is not in it?  The 3-Day is a HUGE undertaking involving tons of time and energy on my part.  I don't currently know how to heal these feelings of betrayal to the point where I can joyfully take on this task, and I know you can only do a volunteer task this big when you can take it on joyfully.

2) I rationally know that most organizations can't help having political aspects as they are made up of individual people who are political beings.  I know that if I really stopped doing business with every organization that did something I didn't agree with or that had a policy I disapproved of, or that made mistakes, I would in all likelyhood have to grow all my own food, make all my own clothing, furniture, toys for my kids.... in short, an organization that only did things *I* approve of doesn't exist. 

3) I signed up for the San Diego 2012 3-Day back in September of last year.  I currently have $605 in my fundraising account for that walk.  My decision would be easier if I didn't already have almost 1/4 of what I need to walk.  I'd take this year off and reevaluate my participation next year.

4) I know that the fight against breast cancer needs to continue.  My passion for that has not changed, but I'm no longer sure that Komen is the vehicle I want to support to do that.

I don't really know where to go from here to resolve the "Should I walk?" question.  However, I want to say once more that I greatly appreciate you taking the time to listen to what I have to say on this and hope that the larger Komen organization hears the relevant parts of my input and the input of other participants and learns from them to improve their organization.

Thank you for your time,

Margie Dowens
(2/22/12) Training: 30 minutes of walking ~ 1.5 mile, Total 22.0 miles
(2/19/12) Training: 5.3 miles in 1 hour 50 minutes, Total: 20.5 miles
(2/18/12) Training: Aerobics, 1 hour
(2/13/12) Training: Aqua Aerobics, 1 hour
(2/6/12) Training: Aqua Aerobics, 1 hour
(2/1/12) Training: Aqua Aerobics, 1 hour
(1/30/12) Training: Aqua Aerobics, 40 minutes
(1/26/12) Training: 3.1 miles in 55 minutes, Total 15.2 miles
(1/23/12) Training: Aqua Aerobics, 1 hour
(1/20/12) Training: 5.1 miles in 1 hr 51 minutes, Total 12.1 miles
(1/18/12) Training: Aqua Aerobics, 1 hour
(1/13/12) Training: 3.5 miles in 1 hr 11 minutes, Total 7 miles
(1/11/12) Training: Aqua Aerobics, 1 hour
(1/10/12) Training: 3.5 miles in 1 hr 16 minutes; Total: 3.5 miles
(1/9/12) Training: Aqua Aerobics, 1 hour
(12/7/11) Fundraising: $200 (matching gift), Total: $605
(12/5/11) Fundraising: $10, Total: $405
(11/28/11) Fundraising: $100, Total: $395