As if Pinktober has not invaded the beauty of Autumn and Halloween enough, BreastCancer.org (BCO) is taking it a step further this year with their Take the Fright Out of Breast Cancer™ campaign. The stated idea is to give Halloween an unnecessary make-over, robbing it of its traditional scary element and adding education. While I’m favor of education, I resent how Breast Cancer Awareness Month (BCAM) encroaches on my favorite holiday more and more each year, so I have a few gripes. Fasten your seatbelts (it’s gonna be a bumpy night….er, article).
The Role of Fear
The outcry against BCO’s planned event has repeatedly brought up the primary point: fear. How many of us deal with more than our share of fear now that breast cancer is in our lives? The proposal to remove fear falls in line with the same old Pinktober nonsense of trying to normalize breast cancer, to make it conform to the “pink-fluffy” narrative so many of us loathe. It shouldn’t really surprise BCO that such a campaign upsets many of us.
In fairness to BCO, their stated goal acknowledges that all fear cannot be removed:
“We know that you can never remove all of the fear around breast cancer. We know that too many people are missing life-saving opportunities for early detection. Too many women and men aren’t getting the best possible treatments. With unclear recommendations around screening and detection and so much new information about treatments, many women are confused and anxious as they try to make important decisions for their health.
Breastcancer.org is committed to replacing uncertainty with clarity, confusion with confidence, and fear with knowledge. Providing people with the clarity, confidence, and knowledge to make the best choices, we believe we can help save lives.”
True, there HAS been too much confusion around mammography recommendations. I am sick to death of seeing a new study every few months pointing out how mammograms don’t actually result in reduction of breast cancer deaths, that we are being over-tested, over-diagnosed, and over-treated, with no alternative solution offered. And right on the heels of these new studies there is always a rebuttal. Hence, those not residing in CancerLand are no doubt confused.
I was surprised when I joined the blogosphere five years ago, just how much dissension there is “behind the pink curtain” regarding many aspects the BCAM messaging. The trepidation around mammograms and the way fear is used to herd women into radiology offices has been a point of interest for me. One of my favorite discussions about this fear mongering comes from (who else?) Gayle Sulik, in a blog post called Fear Mongering. In this essay she points to some skeletal and corpse-like imagery used by awareness organizations, and slogans on ads stating “Nobody is safe. Yet.” I think most of us here in CancerLand, Town of Breast, know that most women fear breast cancer above all else, although breast cancer is not the number one killer of women (heart disease).
I don’t think the accusations of fear mongering factored into BCO’s development process for this campaign. The fear mongering issue is not well known to the general public, and isn’t scaring anyone away from screenings. But I wish BCO had given this issue some thought, because now to me, BCO seems even less attuned to the real issues in breast cancer than ever. BCO, along with so many others, treat mammograms as the be-all-end-all, and when it fails us, it can be a sucker-punch.
Another example Sulik uses in her piece is an ad with a woman in athletic gear, and Sulik points out that the implicit message is that even this strong woman is vulnerable, the viewer should be afraid, very afraid. I kind of laugh at this one though, and wonder if BCO—or any BCAM associated organization—REALLY wants to eliminate fear. I mean, don’t we need fear in order to show our “brave warrior” fight poses? Isn’t fear the ingredient to creating courage? Oh, don’t get me started on the fight language and brave warrior woman myths we breast cancer patients are expected to fulfill—I’ve already spoken my piece on that subject. At any rate, for me this angle calls into question the idea behind the campaign entirely.
Look, I don’t totally agree with all the great breast cancer advocates criticizing the fear mongering, no matter how much I admire them. I’ve written extensively on this topic on my own blog. In short, I was NOT afraid prior to getting cancer. My aunt was diagnosed in the summer of 2010, so I decided to be “proactive” and get my first mammogram that September. It wasn’t FEAR that drove me to demand a mammogram, it was duty, it was the idea of being a “good girl”, of following the directions of countless PSAs. The radiologist failed to realize what he called “density” as actually a big-ass tumor nearly the size of my whole left breast. A few weeks after getting my “looks normal” letter, I was diagnosed as Stage 3b, E/P negative, HER2 positive. I understood NONE of those things. I couldn’t grapple with the concept of false negative—after all those years of being told mammograms are the answer, and mammograms had failed me. I’ve been afraid pretty much all the time since then. So when anyone wants to say fear of breast cancer is over-sold, or that we should remove fear so people will get screened, it’s pretty much all I can do to keep myself from screaming.
Can a Party Be a Remedy?
The state purpose, from the campaign’s about page is this:
Take the Fright Out of Breast Cancer™ is a national campaign to educate and build community support for the leading breast cancer and breast health organization, Breastcancer.org.
Taken with the two paragraphs that precede this statement, I understood this campaign to be about educating people so their fear and confusion would cease preventing them from get potentially life-saving tests. Do I think this campaign will achieve it? No, of course I don’t, or I wouldn’t be writing this.
In short, this campaign encourages people to host events of any kind that raise money for BCO. The “host a party” page has five short instruction videos. The first is a how-to, the second is full of event ideas, the third is how to promote the event, the fourth even more even ideas, and the final video lists reason why one should participate—mostly, raise money for BCO’s programs to educate. None of these videos provides information, or a way to educate anyone, to lessen fears, to encourage screenings. Not sure how “fright” is being taken out.
Oh, there is a “get the facts” button, which leads to videos that will likely be used as TV ads. Below are 8 links about dense breasts, scanxiety, mammograms, etc. The first five are PDFs created by BCO, rather dry reading—well, OK, the first has kicky graphics. The sixth is a slideshow, the seventh is a BuzzFeed quiz, and the final is a slideshow encouraging genetic testing. That in itself is kind of odd because in that first link, the one with the graphics, the factoids that only 5% to 10% of breast cancer is linked to gene mutations and that 85% of breast cancer occurs in women with no family history. I’m confused! Oh wait—isn’t that what this campaign is supposed to remedy?
None of this information is presented in new way. The “mammograms save lives” slogan is used throughout, and the language and tone of that slogan is the theme. In short, this is the same BCAM message that has been sold for the past few decades, just re-packaged, and stretched out to the ultimate goal; replace Halloween as the defining event of October.
Many of us “old timers”—and by that I don’t mean age, I mean how long we’ve been in CancerLand advocacy—will say vehemently: “we are AWARE”. This is mostly true, and for those NOT yet aware, the same old pink memes, games, and parties are unlikely to reach them. The “Fright Out” parties target the same old white-women-of-certain-age-and-income demographic . I’ve long complained that pink ribbons are stagnant symbols, not solutions—and we NEED solutions desperately. I know, I know, I’ve been called out many times for criticizing without offering suggestions. So how about this: tell a little truth. Don’t tell people to be fearless, there is reason to be afraid, and that’s OK and normal. Just be honest about the facts. Mammograms don’t always work, cancer is difficult, treatment sucks, and it can come back and kill you decades later. Better to know this up front in my opinion, because, man, I hated getting my sucker-punch! Face the reality—it takes real courage. No, I’m not going to create an ideal event for BCO that conforms with my parameters—it isn’t my job, they don’t pay me (and I do my own version of truth telling on my blog). But as a breast cancer patient and advocate, I do have the right and the obligation to tell BCO—and everyone else—they are getting this all wrong.
“But you can’t kill the Boogeyman” –Halloween, 1978
Those who know the ol’ Cancer Curmudgeon know that Halloween is my FAVORITE holiday, so I was infuriated when I saw this campaign.
I remember shopping for scarves to cover my bald head shortly after my treatment began. I picked up a rather scary-looking punk-rock-y type of scarf with skulls all over it, wanting to keep my head coverings with my personal style. No airy-fairy pinky things for me! But I put the scarf down after seeing the look of horror on my mother’s face. I realized having something with so much death imagery on my head while being treated for CANCER was a little too much for most to bear.
The point of Halloween historically has been the need for ancient societies to confront death in many ways—whether it be via the soul cakes handed out in years gone by in remembrance of dead ancestors, or other rituals done to mark the dying of the summer harvest and rebirth through the dark part of the yearly cycle. That said, shouldn’t we be talking about cancer’s potential to cause death at Halloween, rather than trying to avoid it like this BCO campaign proposes? If we don’t talk about death at this most appropriate time, then when do we do it?
Now, I know most would not agree with that idea—frankly I don’t either. From the comments of outcry I’ve read, most want to preserve Halloween as a time of fun for children, and don’t want to have their cancer be a part of that. I agree with this—I’m just making a point about how lost we’ve become. Although I prefer my Halloween to be full of witch costumes and classic Universal monsters, I don’t actively confront death or honor my ancestors on that day. I’m all about the fun, the candy, the breaking of taboos and normal behaviors. And at the risk of being “basic”, I just like autumn—the leaves, the sweaters, the boots, all that crap. (Guess I’m not so punk after all smh.)
As a Halloween enthusiast though, I couldn’t help returning to a beloved book, “Death Makes a Holiday”, by David Skal, an American cultural historian. The book opens with an explanation of how the urban legend about razor blades in apples and other dangerous candies began. The myth persists even now, even though it has been debunked. A couple of years ago I overheard people talking about how dangerous Halloween is, and could not help but compare this to how our culture hangs onto breast cancer myths (ahem, mammogram effectiveness, ahem), no matter the amount of debunking. I also re-read Skal’s thoughts on how much we want to “tame” Halloween, to sanitize it, rid it of the scary death stuff. We did it in the early 20th century with attempts to keep mischief makers under control on Halloween, we do it now with free X-rays of candy. Hmm, just like what the pink narrative does, yes?
Maybe it is fitting then, that BCO and maybe all BCAM organizations too, chose October to “tame” and “sanitize” breast cancer. But like the kid in “Halloween” points out, “you can’t kill the boogeyman”—and he’s right, I mean, how many sequels are there (hardee har har)!
The cancer experience is no more meant to be sanitized than Halloween. I want to keep Halloween scary, and I will work forever to keep the reality of breast cancer in the public eye. And part of that reality is, yes, fear.
BCO, please don’t repeat this campaign next year—I know it is too late to stop it this year. BCO was a great help to me in providing basic information when I was first diagnosed, but I outgrew them. I hope BCO and all awareness organizations can grow too.
You can follow and read more from Wendi on her Blog, Another One With The Cancer
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