Wednesday, March 9, 2011

How To Change The Conversation

Recently, there's been a lot of talk on this blog and others, about "changing the conversation" in the way that we, as a society, think about breast cancer and the culture surrounding it.  

What's becoming clearer to me, as I delve deeper into the vast online breast cancer community, is that there is a growing feeling, and what can best be termed as a movement to demand a refocus of existing priorities within the breast cancer fundraising world, and for certain breast cancer organizations to recalibrate their messaging about the disease itself.  There's growing support for the notion that it's time to start telling the truth about breast cancer, and move away from the pink ribbons and the pretty pink feel-good breast cancer experiences that seem to have become the norm, when portrayed to the general public.   

When I have discussed pink culture and breast cancer fundraising on this blog I often receive comments from people who are demonstrably incensed and want to know how our demands for change can translate into meaningful and tangible action.  Here's a small sample;

I'm beyond angry. Your work has opened my eyes even more. What do we need to do to make a change? and make a difference. This is so frustrating! Keep up the great work.

I'm offended by the Race ad. What the f? Why are they making it seem like something women should aspire to? It's cancer! The ad should have the other photo. That's what we're fighting for. I'm sorry, you didn't hear any answers worth your time. I'm sorry Komen continues to miss the boat on research dollar allocation. What's it going to take?

Unbelievable! I'd not heard of this pink town thing. I just feel deeply weary about this.... it doesn't change anything. Awareness? Tell me who doesn't know about breast cancer?

Your snark is delicious. This campaign? Not so much. Absolutely revolting. What fund will the donations benefit? Who's supervising? What a waste of time, energy, and altruism. Keep complaining; I'm with you.

Thank you for sharing these other voices. I applaud these women for taking a stand. I don't mind the "pink stuff." I just want MORE. When the "pink stuff" gets in the way of MORE, than I DO NOT like it and it seems that is what's happening of late. "Money talks" as they say, that's why I'm trying to encourage people to ask where their donated dollars are going in my post today on this same topic. It is time to change the conversation, move beyond the "pink stuff," demand more research and get more done on the goal of eradicating breast cancer.

[W]e need to do something to call attention to our problem (breasts chopped off, horrible drugs, intense pain, you name it). The best way is do that is get traction in the actual media. We need to forward stories about this to the health reporters at regular and/or cable news networks, magazines, newspapers and Internet sites including to the reporter above. Komen does this so to why not beat them at their game. If there is walk in your town, send an announcement to the news stations that your friends are sponsoring a stay at home and sending money to a better organization. Does anyone have media contacts? Do your friends? Spread the word. What about your doctor? My doctor resigned from the local American Cancer Society board. Can't we all do some lobbying with the medical personnel that we come in contact with. We also need to start asking rude questions like why isn't there more met research. What are they doing to push that forward effort forward. Did they report you to NHI? Why don't they sponsor local trials? The unions in Wisconsin know that a good media shot is protesters beseeching the capital (truth in writing if they don't win, we all might as well ship everything to China). It is worth a lot of publicity. Where is Komen located? What if we had people picketing in front of their offices with signs that say, "Stage IV BC Where's My Cure?" The same goes for Congress. The Breast Cancer Coalition collects funds to lobby Congress. They're too polite. Wouldn't it be better for their local affiliates to request appointments back to back with their local politician on their home turf. I'd say picket but most these offices have security that won't allow it. Something a lot easier is to start is a Facebook campaign and pass that along to everyone to get people to post or like. Has anyone thought doing a Twitter campaign where everyone starts Twittering at the same time on the same topic like, "Not Pink."If we start trending on regular basis we could really pique the media's interest. Sorry about this. I am sick of swapping notes on treatments. I don't want to fade out without a damn thing to show for the screwing that I have gotten (and not in a literal sense).....

Today, Gayle Sulik, author of Pink Ribbon Blues has published a "Tools for Action"; a comprehensive list of ideas of how we can go about "changing the conversation" in our everyday lives.  I encourage everybody to take a few minutes to read this list, think about what you can do, add your own ideas, and share it with your own communities.  These actionable items are the kinds of grassroots efforts that can lead to a major sea change  and compliments the advocacy work of organizations like the National Breast Cancer Coalition and Breast Cancer Action.

Come on.  We can make a difference, each and every one of us.


  1. Right on, Anna. I am newly diagnosed with BC, but ironically I've always been uncomfortable with the whole pink ribbon thing, so the above opinions make a lot of sense to me. The sale of pink coffee mugs and garden tools isn't going to make much of a difference, except in the bottom line of the Chinese government. Research is the only way to the end of the cancer nightmare, let's get more money where it counts - in the lab.

  2. Finally, someone has expressed exactly what I believe about cancer research. For years now the percentages of what is being given to research is a very small piece of the pie when looking at the Big picture. Yes people need to be informed and educated about BC but that should never over shadow the fact that BC patients lose their fight each day because so far we do not have a cure. I would rather give my bucks directly to researh in the hopes for a cure than get on the pink wagon that somehow this will cure us .Let's be positive that saves lives ,,"no it does not" Lives will be saved when all the energy and money ,,which is wasted and is put into another festival type event where we use our friends relatives and others to accomplish making jobs for another paid person to host such events. BC 61 year old with (Met.) and Hating the way of things as they exist now ......let's speak out. Pink Stinks!!!!!!!!!

  3. Great post Anna, and thanks for sharing the 'Tools for Action'. It's TIME for a concerted effort anywhere and everywhere, large and small. It all matters!

  4. Anna, I think it's really clear from the comments here that you ARE changing the conversation. Good for you! And THANK YOU.

  5. Anna,
    I think many people are finally starting to "get it" and the conversation is changing, not at the pace we'd like, of course, but at least some discussion seems to be shifting in the right direction. The dollars need to get "shifted" as well. I liked Gayle's list of things one can actually do, because while talking is good, doing is better. Thanks for helping to keep us focused on this topic. You most certainly are making a huge difference, Anna. (And thanks for utilizing a few of my words in your post!)

  6. Anna,

    Thank you for your helping to change the conversation! I donate to Sloan Kettering; I'm hoping the money goes toward researching to find a cure for cancer.

  7. Thanks all for your comments. Gayles toolkit is grassroots activism in action. lets get the message out there!

    Also Beth, when you send in your donations earmark them specifically for research, and that way you can be sure your cash is going to the right place. I hope for a cure one of these days as well!

  8. OK, clearly I should have started reading your blog with this post and I would have answered my own question about what organizations you support. Thanks!


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