Saturday, July 21, 2012

LET'S CHANGE THE CONVERSATION, SHALL WE?

After last week's commotion about the bikini walk and the debate over sitting in the sun and having people question WHY I (and many of YOU) have a problem with the sexualization of breast cancer, I thought it would be a good idea to put together the voices of some of those involved with Pink Ribbons Inc.

Then, another commotion came into focus.  TWO different reviews of the documentary were written.  They were both by men.  I left comments and in one of them I was asked by yet another man, "Bitter much, AnneMarie."  I told him I was not bitter, just angry.  Today, as two young women are preparing to die, I share my anger, my sadness and my determination to see things change.  No.... I'm not bitter but I am highly offended by these reviews.

I'm back in the mode of ranting.  About everything.  It's exhausting.  But hell, someone has to keep hammering away until the message is heard, understood.  Only THEN will I step away with the realization, "I tried and you can't fix stupid." Clearly, however, neither of these men attempted any level of understanding or they could not have possibly written such insensitive (and in places downright insulting) reviews.

From Tom Stockman, we are "shrill" and "Debbie Downer-ish" ... oh... and yes, he includes a link and an address to encourage donations to Komen.  One must question Mr. Stockman's ability to write an unbiased review when he includes a link to donate to just ONE organization from the many breast cancer organizations out there.... How about equal time and exposure for oh, I don't know, let's say.... METAvivor or Dr Susan Love Research Foundation where they really ARE funding research.

And from Joe Williams, you just have to love a statement like this:

"Yet because the film doesn't contain a single sobering image of human suffering, the complaints about commercialization and insensitive language seem like much ado about nothing. After all, the walk-a-thons attract thousands of survivors who understand the gravity of the disease, and the Komen Foundation has helped raise hundreds of millions of dollars to study it."

What?  He needed to see someone gasping their last breath for it to be real?  The walkers understand the gravity of the disease?  Let's ask my friend Donna Peach how she was greeted at a Komen walk where they supposedly understand "the gravity of the disease."  Hell, the VOLUNTEERS don't understand.  But the survivors/walkers do?  Yeah, right.  The metastatic patients are the stain on the ribbon. I defy anyone, anywhere to point me to ANYTHING to show me differently. Don't even GET ME STARTED on the comment about "Komen ..... raise(d) millions of dollars to study it."  Let's get a fact check on that from the late, great and tremendously missed, Rachel Cheetam Moro, shall we?

A third commotion came into focus, too as Angelo Merendino's photo exhibit of his wife's battle with breast cancer that he chronicled so we CAN see "sobering images of human suffering" was removed from The Gathering Place where he was invited to display some of the images.  Gayle Sulik, author of Pink Ribbon Blues, explains it far better than I could ever hope to so I hope you will read about this on her blog.  I saw Angelo's photos of Jen in NYC back in January.  The very same evening, a 39 year old friend was in a nearby hospital.  As I was at the exhibit, she took her last breath and died of metastatic breast cancer.  Is that sobering enough?  I wonder.

No?  How about the words from Angelo's website.... does this clarify things?

"Sadly, most people do not want to hear these realities and at certain points we felt our support fading away. Other cancer survivors share this loss. People assume that treatment makes you better, that things become OK, that life goes back to “normal.” However, there is no normal in cancer-land. Cancer survivors have to define a new sense of normal, often daily. And how can others understand what we had to live with everyday?"

Below are clips I found from different interviews about Pink Ribbons Inc.  Some of these clips may be longer than others but they are ALL worth a listen. Perhaps some of those who were in the "what's the big deal" camp may not yet understand "the big deal."  I hope the words of the women and men in the videos will have a better impact than I did. If one person who didn't realize how the pink ribbon has been a detriment to so many, shifts their attitude ever so slightly, it will have been well worth my time and your support.

Listen with an open mind. Let's change the conversation. It's time. It's past time.... In fact, it's long OVER Time..... When reviews like those are what people are reading, when the true face of how devastating this disease can be is too "painful" to look at, it's imperative for us to raise our voices and expose the ugly truth.  We are not wrapped in a neat pink bow.

I expect to leave this blog up through Monday.  While I do not normally post on the weekend, I'm posting this now.  On Friday night.  I will post new content on Tuesday morning.  I hope that gives everyone plenty of time to read the links I've provided and listen to each one of the clips embedded.  Take your time.  Let it ALL sink in.  All of these events/episodes/outrages are connected.  They belong in one blog entry.

And, please keep two very special women in your thoughts.  They are in rather dire situations and I'm a bit distraught for them and for their loved ones.


(Note:  If there is a brief period of foreign language, once the interviews begin, they are all in English....please don't click away........ )

 












23 comments:

  1. Hi AnneMarie,

    I've read this post, looked at the clips and listened to your radio interview. You've inspired me. Though I had long ago linked to BCAction on my blog, I've just made it much more legit (about time!) sending them a donation and joining. (I've also linked to you on my blog.) I really want to see Pink Ribbon, Inc. Of course, the critical reviews you cite are pathetic as was the bikini parade. Quite a while back I read Barbara's Ehrenreich's piece about corporatization/ feminization of breast cancer, and I'm so glad to be fired up about it all over again. Thank you for helping me feel more sane in the post-cancer aftermath that lingers on and can feel lonely.

    ReplyDelete
    Replies
    1. Thanks, Janis.

      I love reading words like "I'm so glad to be fired up about it all over again." .....

      You make such an excellent point when you say "post-cancer aftermath" which truly captures so much in three simple words. I think this has been my way of reclaiming my life.

      Reading and learning and writing (and yelling, if I must!)..... it's been life changing for me. Hearing that it helped in any small measure makes me smile so again, I say THANK YOU!

      Hugs,
      AnneMarie

      Delete
  2. As usual, AnneMarie, your blog post is chock full of information that is hard to swallow, let alone digest. You've given me such food for thought on these important issues that I won't have to eat for a week. I'm shocked and outraged by the reaction of these mainstream organizations to those who have mets, to those who are hanging on by hope's shredded thread. It reminds me of how my oncologist in a small town in America removed one of the Lilly Oncology on Canvas paintings that was exhibited in the waiting room because it showed two women with bald heads. He thought it might offend somebody. Oh, really? He shouldn't make censoring decisions about something of which he knows nothing. That's our sad reality. Thanks for giving us all these important links and keep on writing! xox

    ReplyDelete
    Replies
    1. Ha, Jan,

      You made me laugh. Won't have to eat for a week.... This was one jam packed crammed post.... but the events are all tied together (at least in my chemobrain, they are!)

      Honestly, I got so exhausted fighting over those two reviews when I left comments and then, the bikini thing and this ongoing Vitamin D from the sun and it's ok to tan in a salon thing.... I'm wiped out.... And, it's only Monday.... Jeez....

      xoxox

      Delete
  3. AnneMarie, I love the way you blog about the big, important things so fearlessly! You are awesome. It's good to know you don't have to live with mets to "see" what happens with us - those of us living with it know all too well. I don't really have the energy to get fired up much these days, so I'm glad it's in such capable hands.

    ReplyDelete
    Replies
    1. Ann,
      You know the biggest reason why I will walk into the fire is on behalf of you and Jenny in NZ who has stopped treatment and Jen on the west coast who just got lousy news and Donna who is constantly dealing with the pain associated with keeping her mets under control and Lori who became my best buddy after we were roomies at NBCC. And Suzanne in Canada, and Christine in Texas... and I HATE listing names because I know I left more than one "someone" out......

      (See comment below...... I'm not being dramatic for effect!!)

      If I left your name out, it's because I'm reeling from the comment beneath this one.... and if for some reason the "author" decides to delete his own comment, it's going into tomorrow's post.

      All my love,

      AnneMarie

      ps-GREAT show today. I got to listen to it when I got home! Nice job. Got a good laugh about the phone number mix up... Yay chemobrain! And your son did an awesome intro!
      xoxox

      Delete
    2. And CJ.... and all the gang at METAvivor... yuk.... I KNEW I shouldn't start naming people.... I'm Sorry for the omissions..... to all... xoxox

      Delete
  4. The fact is I did not, in any way, belittle or say anything disparaging about cancer victims in my review. My jabs were pointed exclusively at those whose hysteria about the pink ribbon campaign I found so bizarre. The movie was a dishonest hit-piece on Komen, something I called the filmmakers out on. It’s they who are injecting their bias into their film, more editorial than documentary. Where does it say film reviewers can’t inject their bias in a review? The filmmakers sure did! Barbara Brenner posts over at the ‘De-fund Komen’ FB page. No bias there, I guess! I suspect many involved in the film have been involved in attacks in Komen and will be working oon exposing that. The guilt-by-association card in the film was obvious. Juxtaposing shady charities with Komen, the most trusted, big-hearted, and successful nonprofit organization in America is deceitful and mean-spirited. I included the link because it’s Komen that is the victim of mean-spirited film made by women who care more about abortion than they do breast cancer. Komen was founded in 1982 by Nancy Brinker in honor of her sister Susan Goodman Komen who died of the disease in 1980. Ms Brinker has travelled the world, raised Billions for the cause and has received the Presidential Medal of Freedom, America’s highest civilian honor. Meanwhile a bunch of miserable little trolls feel the need to post hateful comments on any less-than-fawning review of the film (mine’s not the only one – it’s not a particularly good movie). Whenever I see one of these agenda-driven docs, I think about what I’m not being told. I know dishonest filmmakers like Michael Moore and Ms Pool expect critics to simply regurgitate the political points the film makes in their reviews but a little bit of research is always in order and in this case counters the film’s claims. Komen’s annual report is public and shows what a truly altruistic and honorable group they are. Komen is associated with conservative religious and pro-life groups and I suspect that’s real problem women like you have with Komen. They’re a privately-funded organization (unlike Planned Parenthood, which received $400 Million in annual Federal tax money) which raises their funds through hard work and good will. They’re entitled to do what they want with their money and associations and 88% of the billions raised goes straight to the cause. If you cared about breast cancer victims a fraction as much as the Komen people do, you might realize that you’re actually on the same team but you’re too blinded by your ideology and hatred of those who don’t see things the way you do.

    ReplyDelete
    Replies
    1. Please go derail somewhere else.

      Delete
    2. Hey, Tom -

      How "big-hearted" of you to call those people who disagree with you "trolls." Good to know Komen is related to Charlie Sheen. It clarifies things.

      I'm delighted Ms. Brinker was awarded the Presidential Medal of Freedom. Know what else we have the freedom of in this country? Speech.

      PS: Not a penny more to Komen from me. Not ever.

      Delete
    3. "Shrill" is a term used to humiliate women and silence their anger. I realize from your review and your post that you want us to be good girls and let Mama Brinker decide what is good for us, buy pink things from corporations that poison and profit from us, and then die quietly when we have "lost" the battle with our cancer. I will not be silenced. I will not let the Komen foundation decide what is or isn't worthy of research. I will not buy something pink to allow corporations that poison us to also profit from our disease. In other words, I will be "shrill." I will be a "bitch." And I won't stop until my metastatic, triple-negative breast cancer kills me. Until then, I will proudly wear my "fuck cancer" bracelet and tell everyone I know to stop buying pink shit and supporting Komen.

      P.S. I live in Susan G. Komen's hometown where her grave is a national landmark. The initial dream was wonderful, but it's become perverted in ways I'll wager Susan never dreamed of.

      Delete
    4. I am humbled by the voices of two "strangers" who have who have jumped into this conversation and I want to thank each of you.

      You are "pitch perfect" in your words. I can't add anything to "perfect" and quite simply, Thank You.

      Tangents.... I will be shrill along side you. I will be a bitchblogger until this pink ribbon nonsense comes to an screeching, SHRILL halt. I stand shoulder to shoulder with you and it saddens me to read "metastatic, triple negative" in ways I can't even begin to describe. You are what motivates me to make sure those that choose to buy pink, do so in ways that are financially benefitting "the cause" ... and not "their cause" .... Yes, that initial dream was wonderful and I did reply to Tom in the space where his review appeared. It was deleted. TWICE.

      I suspected he would do this so I made sure to have the reply on THIS blog. I was up until the wee hours writing, rewriting, editing (which is the fallout of my chemobrain due to my "good stage one cancer" and my "mild chemo" .....begging those questions.... WHY are we barely off square one and WHY do you have MTNB???). It's in the post dated today....

      Thank you for raising your voice in ire. Thank you for speaking out and thank you, most of all, for sharing your thoughts in this space.

      I'm honored... by each of you.....

      AnneMarie

      Delete
  5. This is a private blog owned by a woman who is committed only to creating a forum where people with opposing views can have open and respectful dialogue about the need to change the national conversation about cancer, to increase awareness about the funding of research that might finally identify the cause, and ways to prevent. The conversation must change. Too many of our friends are dying. Too many of us still believe in the Komen awareness campaigns, that breast cancer awareness and self exams will prevent cancer. This is a mythology which is setting up the younger generation for more unknowns about their health. In the best country in the world, we are still don't know what causes cancer. I'm quite sure Susan Komen herself, would be dismayed to know that over 30 years since her death, we have made such minimal progress in this area.
    I think she would be sad to see other women, ravaged and undone by the disease, referred to as "miserable little trolls." In honor of Susan AND SO MANY FAMILIES WHO CONTINUE TO DIE FROM THIS HORRIBLE DISEASE, I would ask that we consider the people before the disease, the humanity before the politics, the substance before the medals and the awards. Breast cancer presents one of the best opportunities for us to experience the highest, noblest expressions of humanity - not the worst. I visit this blog, because I know AnnMarie welcomes an open forum, It is a travesty, however, that this "safe space" has been turned into a flashpoint for hateful and at times inhumane commentary about breast cancer patients.
    Visit us every day, every week, and you will see individual hard work to get through workdays with cancer, the good will to be there for children and families, the participation in trusted fundraisers that target the necessary research. In many ways, the online community is our village, and we will see a change in the conversation. Until that time, I would respectfully ask that human beings who are perhaps in Stage 1V are elevated rather than discounted, excluded rather than set aside. This can be done by addressing the highly politicized language that is serving only to rip us all apart. Our friends who are living and dying from cancer deserve at least the promise of respectful, caring, compassionate Language.

    ReplyDelete
    Replies
    1. Yvonne,
      I don't know how to thank you for so beautifully stating exactly how I feel. You epitomize everything that is RIGHT with what "we" are tying to do. I'm humbled by your kindness and your willingness to step into this. We are in this together, aren't we?

      Much love to you,
      AnneMarie

      Delete
  6. Don't listen to Tom. He's trolling people who don't like what he wrote because his ego is bruised and he doesn't like it.

    It's better to have George Stroumboulopoulos (an actual journalist, from video #3)) on our side anyway.

    This is how much Stockman cares about the issue: in our argument on the facebook page he decided to troll the member's wall with crappy and off topic videos of sexy ladies dancing (which is why he was removed.) Take that as you will.

    ReplyDelete
    Replies
    1. OH REALLY????? Thank you for sharing that, Hayley. Now I understand a bit more about why he came HERE and copied words he originally printed on his on review page.... (Or should I say his Komen promo page??)

      Sexy ladies dancing???? This guy needs a serious attitude adjustment but I will keep my snarky remarks HERE and remain on the high road. I don't go into the "house" of another and spew my venom. But here...I'll say what I want.

      I appreciate you pointing this out to me! I hadn't been to the FB page in a few days (indeed, I was pretty much off the grid trying to get some desk work done) so I wasn't aware of ANY of this. You just solidified what I already knew. I feel far less attacked having this information.

      xoxo
      AnneMarie

      Delete
    2. Not to mention his first comment on the FB thread was, "Was Komen's founder a eugenist who spoke at Klan rallies?" That just shows where his "care" lies - not with those shrill breast cancer survivors, but with a distaste for Planned Parenthood. He then tried to deny that he was talking about Margaret Sanger (lol.)

      It's interesting to me that someone can follow women around the internet who link to and disagree to his public review, calling them trolls.

      Someone of such a delicate sensibility and fragile ego, like Mr. Stockman, needs to find a new career. As I told him on the FB thread, it's really unprofessional and quite unhealthy to have this kind of reaction as a journalist. Write your review. Have your opinions. But don't troll the people who happen to disagree with you. If you don't like it, stay off the goddamn internet.

      Delete
    3. Hayley...
      How convenient... I replied on the review page. Again, with respect. This morning, the comment was gone. However... I left my reply in my own blog post (post date today, July 24th).

      And.... I just got a comment that made every single bit of this worth every single ounce of angst... it was from one of the women in the support group featured in the movie. Now I know why I do this and WHY I will never stop.

      xoxoxo

      Delete
  7. I don't honestly know how anyone could have sat through the Pink Ribbons, Inc., and really listened to the women in the metastatic support group, and not been moved to tears. If they and their words weren't real enough, graphic enough, I don't know what is. Have we become the sort of culture that is so inured to tragedy and sensationalism that we can only repond to intrusive, graphic and over-the-top portrayals of reality? I don't know about anyone else, but I cried through a good half of the film.

    Hang tough, my friend.

    ReplyDelete
    Replies
    1. Kathi,

      I swallowed many a lump during the film, too. I know we are arm in arm along with so many others in this blog arena in our support for those with metastatic disease. That group of women displayed such grace and honesty throughout the entire film. Watch for Wednesday's post. I heard from one of them...... THAT made the angst over such mean-spirited ugliness disappear.

      Thanks as always, for having my back...

      xoxox

      Delete
  8. I have a really hard time taking "Tom" seriously ... first off, Pink Ribbons, Inc. is a DOCUMENTARY. A film, not a 'movie' that was meant to entertain. And it might surprise him to know this film was written and produced almost a year before Komen imploded earlier this year. It was just a ironic coincidence that it was released in Canada the same weekend as the Planned Parenthood fiasco.

    That said ... there is so, so, much more. Many of you have said it, but whatever "Tom" is drinking or smoking, please get me some. Komen is an embarrassment and has misrepresented how they spend the money they raise and worse, has allowed companies (such as alcohol makers) to profit from the pink ribbon when that is actually a known cause of BC -- and out of the other side of their mouth, they caution women not to drink. That pretty much says it all.

    With regard to the Gathering Place flap, I am fortunate to have known Jennifer Merendino personally and have advised her husband on some of the PR fallout that has occurred since TGP pulled the plug on their exhibit.

    I will say this: That a cancer support organization could be so grossly out of touch with the community it serves is absolutely unconscionable and how the senior executives of The Gathering Place (TGP) did not consider the effect such powerful images would have on their clientele defies basic logic. That this same group of executives also never considered the potential public backlash of their decision to remove the exhibit and/or prepared a crisis communication plan to address what quickly became a viral controversy speaks for itself — and not ironically, is consistent with the flawed decision making process which created the entire fiasco to begin with.

    While TGP has indeed apologized profusely, there is a big difference between making an apology and being accountable for one's actions. These circumstances were extreme and the situation was of their own making and as such, TGP had a moral obligation to find a new home for the exhibit. Knowing what I do about crisis management, I assure you, that would have gone a LONG WAY with anyone who was upset with the decision to remove the exhibit. Few people would argue that perhaps TGP (or any other cancer support or treatment center) is not an appropriate venue for this exhibit -- however, Mr. Merendino was extended an invitation to do display his work there and TGP pre-approved the images. At very least, TGP should be compensating Mr. Merendino for the costs of expediting his exhibit for their event --- especially since they benefited from the advance publicity of hosting it.

    TGP handled this badly from start to finish and an 'apology' and even 'multiple apologies' don't do justice to the situation they created. Perhaps the Board of Directors needs to reconsider the qualifications of everyone who was involved in the flawed decision making process that led to this mess. To not have the foresight to know how distressing such images would be to the community they serve is beyond unacceptable.

    ReplyDelete
    Replies
    1. BA...

      First of all... thank you for sharing your thoughts about this "movie mess" .... and yes, it was an odd coincidence AND..... the first showing was actually in in film festival in Toronto in September, 2011 which was even months before the SGK self-inflicted mess. The book upon which the documentary is based was written years earlier. Knowing that and having this guy tell me about fact checking had my anger meter at an 11.

      More importantly, thank you for shedding additional light on what happened with The Gathering Place and the photo exhibit. I am so very sorry to read that you suffered a very personal heartbreak when Jennifer died as one of her "real life" friends. Mr. Merendino's situation got buried in the midst of this mess and that is something I would like to rectify. Just as the blog I posted for July 24th deals with this Movie Mania, I would like to devote equal space to what happened to Angelo. Although I knew neither of them personally, I feel a sense of connection because Jennifer was treated at MSKCC where I, too was treated. I went to the exhibit in NYC in January. I'm sure I've mentioned this on this blog but if you didn't see it, I was AT the exhibit (with no cell service) when my 39 year old friend died of MBC. She, too was a patient at MSKCC. For all of these reasons and for so many others, I'd like to give him the same "attention." Perhaps you might help with that?

      I always appreciate when you share your voice here with me...

      Much love,
      AnneMarie

      Delete