My grandmother Venecie May died of breast cancer in 1945 at the age 41, leaving behind 5 very sad and confused children. The details of her illness were only whispered around them — a dreadful, embarrassing thing. So vague were those conversations that I didn’t learn what had killed her until I was myself diagnosed at 43.
The ways we publicly and privately understand breast cancer have utterly transformed over the last two generations. Until the 1960s the language of breast cancer was laced with the sense of punishment and defeat — “victims”, “attack,” and so on. By the time I started treatment in 2008, I entered a world where sharing the diagnosis most often elicited empathy, there were many support groups of other women to talk with and lean on, and moving through treatment yielded congratulations for being “so brave.” Women are not “patients” so much any more, and rather proclaim their “survivor” status on their t-shirts and bumper stickers with pride (I actually drove to work today behind a pink ribboned SIR5IR plate). This de-stigmatization has been highly successful from public health perspective, rallying research dollars and pushing helpful legislation, prolonging lives and reducing disability. Women are more likely to have screening mammograms and catch cancer earlier, persist with long and complicated treatments, and be able to rally the support of many others around them as they do.
The pink ribbon that stands for “breast cancer awareness” is now one of the most recognized symbols in the US. It communicates “strength, hope, responsibility, empathy, and permission to discuss.” And it has become the key narrative of breast cancer. It embraces hope and resiliency, strongly shapes the idea that being a survivor is about rallying against a blameless disease, encourages loving your “new” self, resisting all urge to be anxious or depressed, and reclaiming your profound feminine power. Each October the pink ribbon has a whole month, and vast and noisy efforts roll out across the US: community fund-raising activities, morning show interviews with breast cancer “she-roes,” and thousands of products sporting the pink ribbon. There are many lovers and many critics of this pinkification. To many, it is validating and empowering. Others suggest that everyone is already “aware” of breast cancer and it is a major distraction from the goal of actually preventing and treating the disease instead. To some pink ribboning is an exploitative marketing tool to move products — and few sales provide any meaningful resources back to anti-cancer efforts. Some products (like a pink-themed bucket of KFC) are probably even themselves cancer-causing. Regardless of where you stand, we can generally
agree that the spread of pink culture is one of de-stigmatization, and in the most broad strokes it has been successful.
But one of the truisms about much stigma reduction is that it tends to be a deployed as a fairly blunt instrument even when it works. While efforts like pinkification might help many feel better about themselves, it can also unintentionally create new and often more complicated forms of emotional and physical damage. For one, living up to the pink ribbon takes real effort. A good breast cancer “warrior” must run for the cure, with her reconstructed breast aloft, with her wig on straight or chemo curls cutely arranged , best friends and loving husband at her side — and (most important!) a smile on her face. Looking unattractive or unkempt even when you are sick? Less than ideal. Depressed and despondent because of your cancer diagnosis or treatment? Not really allowed. Have metastatic (stage 4) cancer? Pink says everyone is meant to get better (assumably in large part because of a great attitude), and “awareness” is enough. There is a sense that pink culture has netted less urgency in finding a cure for women with the most life-threatening forms of breast cancer. Certainly only very small percentage of research funding goes to this most life threatening forms of breast cancer, and the number of women dying once they hit stage 4 isn’t slowing much at all. At the other end of the spectrum, there is also the concern that all this so much “awareness” is also leading to women having cancer treatments who would have done as well or better without it.
Pinkification is also not much help for the 1% of breast cancers that happen in men. The 2,600 who will get diagnosed in the US each year enter a world of pink that suggests no place for them. They don’t have support groups readily available. They are less likely to have a doctor listen to their concerns, are often embarrassed about the diagnosis and less willing to share it with others. Men in treatment suggest that breast cancer is ‘worse for women’, and women need greater attention and care, adding to men’s sense of marginality and isolation. Whereas pink culture can help women regain their femininity (and often insists they must), there is little room in breast cancer treatment for men to reclaim their masculinity. There is also almost no experimental research on men’s breast cancer at all, so men’s treatment just follows women’s protocols. If the data prove that men have lower survival rates compared to women (they are equivocal at present), there shouldn’t be too much surprise. And, have any other cancer than breast? Line up behind. Breast cancer now dominates all cancer awareness discussion and effort, and is where much of the philanthropic energy is centered.
So, all told, it seems time for some serious discussion about pink, and especially those that this completely dominant hope-and-healing narrative excludes. And, we also need to be concerned right now about thinking through the possible pitfalls of the wholesale, enthusiastic roll out of a pink culture around the rest of the globe. For example, Saudi Arabia — a place where breast cancer rates are very high and prevention is extremely stigmatized, is all set to think pink.