Not Full Circle Yet

Maybe there is a backlash to the backlash in cancer culture. I’ve mentioned it a few times in assorted posts on this blog, how those of us criticizing all things Pink and rah rah are finally being “heard”, at least in CancerLand, and I think there is a push back or defensiveness resulting from this. (See here)

I am not a breast cancer historian; if I were not so busy/lazy, I’d re-read the sections in Gayle Sulik’s “Pink Ribbon Blues” chronicling the rise of the Ribbon and the adoption of warrior, I’m-a-survivor-kicking-cancer-ass slogans, to understand when they began to permeate our culture. Was it the early 90s, maybe? I have no idea when the criticism of this culture began—I only became aware of it when I moved to CancerLand. One of the first things I managed to read was Barbara Ehrenreich’s “Welcome to Cancerland” essay as it appeared in “Harper’s Magazine”. Re-reading it today as I write this, I’m reminded the roots of the women’s health/breast cancer awareness campaigns had a gritty, less pretty start. There were demands about the environment, demands to be included in medical decision-making. Somehow and somewhere along the way it go co-opted. Yes, by Komen primarily, but other groups, and more importantly, millions of patients, went along with it. And then our society became all about fight/win/be positive when it came to illnesses and many other issues.

So when did the backlash begin? Well, Ehrenreich’s essay appeared in the November 2001 issue, so at least as early as 2001 breast cancer patients were uneasy with the “tyranny of positivity”. I’m sure there are earlier examples—but the fact that I don’t know about them, that I only learned about others expressing how I felt when I went looking for them, is kind of my point! The pink/rah rah/think positive to beat cancer was, during my time in treatment, and is still today, THE dominant cancer experience narrative.

As I’ve noted a number of times in past blog posts, it was a relief to find other bloggers expressing the same anger, disgust, etc., I felt. To say these others saved my life is hyperbole, so maybe I’ll just say finding the like-minded saved my sanity.  But as I’ve spent more time in various cancer social media (my blog, Facebook, Twitter, and Tumblr), and even in some “regular”, non-health specific outlets, I’ve noticed some essays with titles or prefaces that are defensive, or have this tone of “it’s not cool to be positive about cancer, but I’m a rebel!” going on. I cannot remember the first one I read exactly—I do remember being frustrated at the finger-wagging directed at “all these ungrateful, complaining breast cancer patients”. Producer Annie Goodman portrayed herself as a contrarian in her Tumblr post “So I Don’t Hate Pink”, relying on the classic, “where would we be without pink?”, and another user did the same in “The Power of Pink”. Goodman throws down the challenge of—if you don’t like something, don’t waste time complaining, change it.

Hmmm, the question of the usefullness of complaining, the absurdity of the notion that I, a redneck pet sitter in Mayberry USA, can influence culture the same way a media figure such as Goodman or some celebrity, yeah, I’ll deal with that in a future post. As for being grateful for all that Pink has done for us, I’ve addressed that in Burden of Gratitude, and might do so again.

But here’s the thing. There seems to be this idea in CancerLand that the culture HAS changed, that people who call themselves warriors/positive-minded are being picked on. See my description of this incident (from Reciprocity and Respect):

Long ago I reposted or tweeted some official-medical journal type article about how the warrior language can be damaging for many cancer patients. This was a report about a study on the issue, NOT some random blogger opinion piece. I got some comment or push back from someone, protesting that many folks found it helpful to be warriors, and they were tired of getting criticized for it.

It was weird because 1) I did not write the article, much less conduct the study and 2) I was merely posting it, not criticizing, and I did not find the language of the article to criticize the folks who do use the warrior language. Even weirder, it seemed like the victor claiming to be the persecuted to me—the warrior language is pretty pervasive and accepted as the social norm. Sure lots of bloggers post about their discomfort with the term, but it has not resulted in some cultural shift in which the word is used less, and folks identifying as warriors are in the minority. Cancer warrior is a commonly used term in society, in the media, in the Livestrong culture that still persists today.

The exchange with the person ended with the person saying something along the lines of if I don’t like it, don’t use it, but don’t criticize those who do. This was the weirdest part of all. Why? Because I don’t use it (so I did not need to be advised to not use it), but that NEVER stops others from using it to describe me against my will.

The proverbial straw broke my back the other night though, happened when I came across this blog from Cure magazine—the opening lines just hit me very hard:

Giving cancer any type of credit is like entering a forbidden city, but maybe somewhere in there, cancer can in fact lead us to some positives in our lives.

Look, I am NOT putting her down or implying some “good” cannot happen for some patients—for me this issue is too complex for merely looking at cancer as the BEST or the WORST that ever happened to me (see Not Behind Me, Woven Into Me).

But I do NOT think anyone finding positive in cancer (and writing about it) is committing some edgy, brave act, like going to a forbidden city. How can it be so, when we are advised to find the positive continually by celebrity cancer patients, by actual medical centers (see Medical Obligations)? How is negativity the norm when a surgeon who dances in the OR prior to her breast amputation is heralded as a heroine? How is poo-pooing the rah-rahing acceptable when Komen remains THE name in breast cancer awareness, and the recent American Cancer Society ad campaign exists?

No, we have NOT come full circle. The I-overcame-my-adversity-as-a-warrior-and-a-spunky-spirit narrative is still the one in all the magazines and on all the feel good stories on the fake news shows.  When I read/hear others claiming that the “be positive” route is now the outsider stance—well, it just smacks of the victors claiming to be the underdogs to my mind. We have not come back around to a point in which those of us making our so-called negative points are dominant the narrative. There has been no mass cultural shift. Are the “negative nellys” heard a bit more these days? Sure, but not without a fight (hello Facebook)!

No, no, no, I’m not saying it is right to attack or berate anyone for wishing to be positive. But I would remind everyone that for such a long time, even now, the “stop being negative” accusation is thrown around far too often. It has taken me over three years to not get my hackles raised every time I read some “look at the bright side” comment or post. True, I try to “protect” myself from it be carefully setting up my social media so I avoid stuff that annoys me. And no, I’m not talking about blatant misinformation, lack of education. Of course fact must be correct, misinformation corrected. That sort of thing is better done gently, rather than the “you got schooled” manner that seems to be the norm. I’m just saying, hey, there’s a reason the be positive directives are like nails on a chalkboard for many of us

No we have not come full circle, at least in my view. Maybe I’m wrong, what do you think? And does anyone think we ever will come full circle? Feel free to answer—the questions are not rhetorical.