The PR War for Cancer Awareness has Reduced the Stigma, but not the Cost, of Illness
From Whispers to Shouts: The Ways We Talk About Cancer by Elaine Schattner. Columbia University Press, 376 pages. 2023.
IN FEBRUARY, an eighteen-thousand-ton train carrying industrial chemicals derailed near East Palestine, Ohio, spilling more than a hundred thousand gallons of pollutants that most of us are lucky enough to have no idea about, like vinyl chloride. A few days later, officials decided to burn several tanks of toxic cargo to stop them from exploding. The column of black smoke was visible for miles.
Since then, locals have reported symptoms like rashes and coughing; some have been diagnosed with chemical bronchitis. As of March 1, the EPA said that air quality tests from 578 homes showed no problems, and that the water is actually great to drink. (Officials quickly completed the ritual of ingesting what Tarence Ray calls the “Devil’s Milkshake.”) Yet outside experts argue that the agency has been slow to act on testing for dioxins, a toxic byproduct of burning vinyl chloride. “Everything I put in my mouth tastes like a copper penny, from water to toothpaste to pasta and bread,” one resident told The Guardian. That’s probably fine, right?
These are urgent health concerns, interfering with daily life. Beyond that, there is the awful long-term prospect that the spill may cause cancer in local residents. Vinyl chloride is particularly prone to causing liver cancer, which has an overall five-year survival rate of about 20 percent, but also “brain and lung cancers, lymphoma, and leukemia,” according to the National Cancer Institute. It could take up to twenty years or even longer for cancers related to the spill to materialize. Residents are facing a metaphorical “looming hazardous cloud, not knowing what it’s going to do to our future, hanging over our heads,” as a woman who lives a few hundred yards from the crash site put it.
The plume of Satanic smoke in East Palestine was also a reminder for the rest of the country that carcinogenic chemicals are not so far away from our own daily lives. First, yes, apparently they are being choo-choo’d along our rails all the time, mere feet from schools and rivers. They are also in our furniture, our toilet paper, our cleaning products. Residents of California are familiar with the hilarious Proposition 65 warnings, which tell you that basically everything you touch is known to the state to cause cancer. As always, the onus is on the consumer, not the producer, to find a solution. Choose the right product; remember the names of more than 250 chemicals that might hurt you in years or decades; comb the ingredients list of everything you buy. There is a balance to be struck between being aware of the risks we’re taking and being paralyzed by how hard it is to avoid carcinogens. We know it’s bad to live downstream from a chemical spill. What about driving, eating processed food, or working at night? Could you avoid all that if you tried? And if you might get cancer from some unknown exposure anyway, what’s the point of all that virtuous avoidance?
The question of why one individual gets cancer and another doesn’t is often not answerable, at least not confidently. But for years, that didn’t stop ordinary people and doctors alike from ostracizing cancer patients or prematurely consigning them to death. A new book by Elaine Schattner, From Whispers to Shouts: The Ways We Talk About Cancer, explores why cancer patients, once shunned and stigmatized, are now able to talk publicly about their illness. It’s a powerfully illuminating narrative of how things changed over the last century or so, both thorough and compelling. But for all its insight about the ways that increased awareness of cancer paved the way for more research and better prognoses, the book sidesteps the question of why this rhetorical shift was not accompanied by making cancer treatment affordable and available to all. No matter how kindly we view the sick, or how much we champion their cause, they still have to pay. And in a country without universal health care, paying might very well leave a cancer patient or their family bankrupt.
Cancer holds a uniquely terrifying place in our imaginations in part because, for most of human history, it was a death sentence. Imagine the horrified Ancient Greeks who named it karkinoma, after the crab, because the disease appeared as a lump with veins stretching out from all sides, like a crab’s legs. Perhaps those with karkinoma were the lucky ones; other cancers would have just killed people slowly and invisibly, from the inside. The earliest writing yet discovered about cancer, from ancient Egypt, reflects this reality: “There is no treatment.”
This, of course, is no longer true. Though cancer kills more than six hundred thousand people in the United States per year, the remarkable progress of cancer treatment slows or eradicates cancer in millions more. Oncologists can now identify individual genes that indicate a person will respond to immunotherapy treatment. Cancer is still frightening, and can still be brutally painful and deadly, but a diagnosis is not what it once was.