I was fully entrenched in the early days of speaking up via social media as to the reality of breast cancer. The dominant narrative five years ago was one of triumphant defeat of a scary disease; of fun and pink ribbons. Along with others, I felt marginalized — yes grateful to be alive but also broken by treatment. And what about the pesky facts of breast cancer – that the only way to know for sure you’ve been cured is to die of something else? And, of course, where do people who die of this rotten disease fit into the pretty and uplifting stories of survivorship? Social media helped us to find each other and speak our truths. That was a good thing.
I don’t believe that the pink ribbon movement started with the intent to marginalize anyone. I believe they wanted to raise money to cure cancer. I imagine they believed that by dragging the disease into the light, by making is seem like less of a bogeyman, they would help. More people would be attracted to the cause and willing to invest. But over time the idea became an institution, no longer nimble enough to respond to cries for change.
My friend and mentor, Mary Pierce Brosmer, warned me against going to war with the pink ribbon folks. We talked for months and I came to believe that waging war against the dominant narrative is a recipe for failure. Yes, you might succeed in usurping power, but then what? For starters, how will destroying the current structure be seen by well-intentioned people who bought into the pink ribbon narrative? Wouldn’t it be much, much more effective in the long run to create a system in which we can co-exist and work together? Borrowing again from the problematic war metaphor — maybe we can win the war, but how do we win the peace?
I realize now that you can make room at the table in a couple of ways — either you can kick out the people who are currently at the table and take their chairs, or you can build a bigger table.
I know the prospect of chair stealing brings the possibility of a greater emotional payoff. But that’s a temporary high and like all highs it comes with a hangover.
This, however, is not an easy sell. There’s no elevator speech. It’s work that requires soul-searching, a commitment to inclusion, and unending vigilance.
It’s a work that is never done.
I came to believe that making the table bigger was the only approach to bring change, so when I read Bill Keller’s column, Heroic Measures, last week, I was heartened that someone with such a big platform said this:
…Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.
In the voluminous backlash against this Op Ed, the point has been made that Adams rejects the mantel of warrior. I stipulate — Adams has voiced her rejection clearly. Perhaps Keller should have stated that plainly but I don’t think that point is germane to his piece. Whether she rejects it or not, her large twitter following (almost 14,000 as of this writing) following shows that her work has attracted readers en masse. Her Twitter description reads in part, “doing as much as I can for as long as I can.”
So perhaps, despite her rejection of the warrior model of cancer, she represents that for people.
Or perhaps this is a new twist on how we define a warrior, altered by what people call the e-patient movement.
I’ve argued from the beginning that this article was grossly misinterpreted as a personal attack, this is a perfect example. I think Keller’s point is not about how Adams characterizes herself, but rather about how she has come to be seen in the world.
His larger point is this — if people consider her the model for how to have cancer, how are people like his father-in-law viewed? As failures? How do we ever even hear these stories if they never garner the level of attention that Adams’ has?
Again, this is not about Adams or her own personal story. This is about what her story may represent in this brave new world of social media.
Back when Mary and I were talking about creating real change, I found myself getting frustrated with my inability to clearly communicate my vision. So frustrated, in fact, that I walked away from it all believing that real change is impossible. There just weren’t enough people who wanted to do the work of building a bigger table.
A couple of years ago, Komen the Pink Goliath began to fall apart and I wondered then what would rise up from its ashes.
I’m afraid I got my answer this week – a new sort of orthodoxy that bears a striking resemblance to the old sort.
Personally questioning the motivation of the writers, questioning their ethics, calling them playground names, demanding apologies, inserting subjective ideas of ill intent, trying to ride the coattails of unrelated but emotionally charged issues by (ab)using terms like “cyberbulling” serve only one purpose — to silence those who disagree. The Kellers and anyone else who dissent are banished to the same margins pink ribbon tyrants used to use.
Until we build a bigger table (a job that’s never finished) we will repeat this pattern of climbing to the top of the hierarchy and fighting to be on the throne, to be the one who decides which stories matter most.
I think the many of the people I pinned my early hopes on have gone too far down the path toward the castle to reconsider, but I hope, sincerely, there are still enough people at the crossroads willing to gather wood.