Language and Its Discontents
According to Genesis, the first humans had only one language: this made them so ambitious and so dexterous that they set about building a tower that reached as high as the sky. God was offended at their audacity, and He punished them in a subtle manner: not with a thunderbolt but by confounding their speech…we can conclude that linguistic differences were perceived from the earliest times as a curse.
Primo Levi, To Translate and Be Translated
I grew up with two languages and regret not having learned more, if only to enjoy a wider range of nuance, jokes, poems, and slang. Technically translatable from one language to another, subtleties, punch lines, rhymes, and colloquial meanings are lost or next to impossible to convey. Try explaining a joke to someone who doesn’t get it to see how quickly any sense of humor can be lost.
Although the overwhelming majority of people in the world are grounded in one language, most learn new ones throughout their lives, especially with the rapid changes modernity brings these days. Every job, every profession, every pastime and sport, every age group, every culture has its own selection of words and meanings known pretty much only to them.
Regional dialects in many languages can make mutual comprehension difficult, unlike American English, which only has accents. For example, army recruits from Seattle and Miami who end up in the same company would have little problem understanding each other.
Language is much more than words and meanings, it’s a way of perceiving the world or, as is best expressed in German, one’s Weltanschauung. Adding the various jargons of the examples cited above only diversifies individual views even more.
A cancer diagnosis imposes a whole new vocabulary on patients and caregivers, one wholly alien to those with no knowledge or experience of cancer. Plus there are certain words unique to particular cancer types.
Unfortunately, the precision of medical terms is too often substituted by and confused with marketing terms, especially in the United States today. This is cancer’s Tower of Babel, a curse of sorts that parades as progress and science, little more than the language of marketing, creating potential profit centers through means of patient advocacy, education, and marketing.
Most obvious is the word innovation, a subjective term that Webster’s Dictionary defines as “the introduction of something new” and “a new idea, method, or device.” It does not mean or imply invent – “to devise by thinking: FABRICATE; to produce (as something useful) for the first time through the use of imagination or of ingenious thinking and experiment,” create – “to bring into existence,” or sea change – “TRANSFORMATION.”
Compare these to the definition of innovate – “to introduce as if new” [emphasis added]. In the manner it is commonly used by business interests today, innovation is in the eye of the beholder; it means whatever its proponent decides it means to entice the adoption and internalization their intended meaning. In reality, this is nothing more than a cynical quest to create markets and profit centers, regardless of whatever lipstick is put on the word in order to hide its realities.
In cancer, the faith of innovation includes tweaking a molecule to extend an exclusive patent is innovation. Limiting access to readily accessible therapies; putting them out of reach not for reasons of supply, but to justify profits and high prices is innovation. Spending billions on advertising is innovation. Being the biggest funder of lobbying to protect those profits through legislation and administrative rules is innovation.
“Disruption” is another nebulous slogan often used within the rhetorical vicinity of the corrupted interpretation of innovation. To disrupt, according to Webster’s, means “to break apart: RUPTURE…to throw into disorder.” I first became aware of the misapplication of the term disruption years ago after reading books by Diane Ravitch, an education scholar who, decades ago as Assistant Secretary of Education in the George H.W. Bush administration, was an early advocate of creating privatized forms of public education like charter schools and education vouchers for private studies.
More than twenty-five years later, after she carefully examined the data and effects of George W. Bush’s and Barack Obama’s comprehensive education policies, she found ideas she once championed were not only wrong, but incredibly destructive. “Disruption,” Ravitch concluded, “is a disaster for children, families, schools, and communities.” What children “need [is] continuity and stability [and] adults who are a reliable presence in their lives.” (As one who attended ten schools in ten different places during his K-12 years, I can relate.)
Disruption leads to the firing of teachers based on arbitrary standards of students’ test scores, hailed by proponents as “scientific.” In reality, creating new profit centers is the intention – new textbooks, consultants to “train” teachers with “innovative” methods, vouchers to pay for private and religious schools for students and families who already attend them – all at the expense of children’s welfare. They and their teachers become widgets, in a sense.
When applied to cancer, the absurdity of the gospel of disruption becomes clear. Using this “logic,” the diverse activities of cancer centers like Memorial Sloan Kettering or MD Anderson would be distilled into one number based on arbitrary, unrealistic metrics (another term worth exploring another day).
Pancreatic cancer would necessarily be ranked among the least competent specialties and bring down the “grade” of an entire clinic. After all, according to the most recent statistics, the five-year survival rate is a low 12.8 percent, as compared to 61.1 percent in myeloma or 97.5 percent in prostate cancer. Taking that logic further, obviously prostate cancer specialists could be considered to be “better” than their counterparts in pancreatic cancer or myeloma.
Further application of this disruptive logic would mean cancer treatments with less successful (read: higher mortality rates) outcomes would need new, innovative methods to close so-called gaps – medical texts would need to be rewritten, patients who “fail” would get vouchers to go to other cancer clinics, management consultants with experience in disruption would be brought in to demonstrate the error of medical professionals’ ways.
And all would require shifting priorities, new spending that had nothing to do with medical education or patient care, and reassignments or firings of medical professionals deemed less effective according to the standards set by laypersons.
I use the word gospel intentionally, because these rhetorical devices are articles of faith, not conclusions based on applications of the scientific method. These can be traced back to the late Clayton Christensen, a Harvard business school professor and Massachusetts bishop in the Church of Latter Day Saints, who concocted the business theory of “disruptive innovation.” In the past two-to-three decades, his ideas have spread like wildfire, seeping into virtually every potential profit-making endeavor, public or private.
Christensen’s theories have largely been unquestioningly accepted and promoted by MBA programs throughout the nation and, to various degrees, have infiltrated virtually every part of business and social organization activity. Based mostly on post facto rationalizations, the theory of disruptive innovation is not predictive, although billions of dollars have been spent – wasted? – to create jobs, marketing, and self-fulfilling “studies.”
One of his strongest critics cited “disruptive” as “the most pernicious cliché of our time.” In acknowledging its “powerful appeal, because it explains something we’ve all seen happen, even marked off our own decades by: the churning of businesses from start-ups to powerhouses to irrelevance or near-irrelevance.” Furthermore,
…disruptive is now slapped onto every act of cultural defiance or technical derring-do, whether it has to do with business or not, and Christensen has not tried to rein in the word’s inflation.
To Christensen’s disciples, it is as though some Adam Smith-like unseen hand is mingling with a Hegelian/Marxist notion of inevitable cycles of historical determinism in which disruption and innovation are essential to human progress. Especially when it comes to making money. One doesn’t have to just look to critics. His own words about his religious beliefs provide evidence that he was seemingly more of a “do as I say, not as I do” salesman:
I actually have come to feel badly for my friends who belong to faiths in which professional clergy are employed – because they don’t know how much joy they miss when they ‘outsource’ the teaching and care of the members of their church to specially trained professionals.
Outsourcing is at the heart of disruptive innovation, yet Christensen’s personal statement denigrates the very idea of it in his own faith. There’s a lesson in there somewhere.
The concepts of innovation and disruption have transformed from marketing ploys to become canon, for its believers and acolytes. To me, this underscores the elastic nature of words, how they can be stretched beyond the bounds of precise description.
Primo Levi, best known for writing about the Holocaust and surviving Auschwitz, was a chemist at a paint factory. Later in his life, he wrote many essays about the nature of language, applying to them his professional passion for separating, purifying, and understanding the nature of chemical elements. Chemistry was, for him, a scientific form of the poetry of precision.
As a writer of essays, he often applied this instinct of identifying clarity to language. In writing about his experience of how one barrel of sawdust out of ten – sawdust was kept in reserve as a flame retardant – unexplainably caught fire. When “someone started talking about spontaneous combustion…everyone felt reassured, because once you give something unknown a name you immediately have the impression that you know more about it.”
When Levi consulted with the local fire chief, “he didn’t have very clear ideas about spontaneous combustion, in fact, he considered it to be a trick name, a word to cover up ignorance…” As further investigation determined the cause, that the type of wood from which the sawdust came was like “virtually all organic substances” that have a point at which “we can see [them] change their state abruptly, unexpectantly” citing “a clear sky that is secretly saturated with humidity and suddenly turns cloudy” as an example.
Interestingly, “the boundaries of this fragile stability” is what “chemists call metastability.” Cancer patients know something about metastases. They should also know it doesn’t just refer to tumors in the body. Language too, can metastasize as with creating definitions and perceptions having nothing to do with what they actually mean.
This is unfortunately one more of many potential pitfalls for cancer patients. Language of progress can actually make them unknowing pawns of interests claiming to represent their most essential medical needs.
I have written in past weeks about different ways to view disparities in cancer research and treatment, by applying the concept of diversity as a possible way to reframe the issue with great inclusivity. Doing so now in the United States is a pipe-dream at best, an insurmountable wall at worst. Diversity, equity, and inclusion (DEI) is now perceived by about half of the nation as being as evil as slavery or the Holocaust. That’s an unfortunate, tragic fact.
My hope is for more cancer patients who might feel this way to at least become open to the source of these ideas. The problem, as I see it – and many of you will call me naïve, partisan, deluded, or all three – is that the language used to denigrate the concept had nothing to do with it’s reality. It is not an ideology, but indeed a fact that disparities in race, gender, economic status, literacy levels, and so on are indeed real. They can be reliably explained when using the scientific method.
This is also why I felt it important to discuss the potential implications of a Supreme Court decision on myeloma patients and the cancer community. Many will claim this to be too political and not having anything to do with myeloma history. But the language of public policy matters to the reality of disease, probably more so today than at any other time in American history and it will only continue to be so.
Although I am not a myeloma patient, my knowledge, memories, and experience of the people of myeloma – patients, caregivers, families, friends, physicians, nurses, researchers – have shaped my views of not only the disease’s history, but my personal Weltanschauung too.
You can’t have one without the other. To ensure substantive progress requires us to at least have common definitions about the things that matter and not be distracted by irrelevant or destructive rhetoric. In my view, innovation and disruption distract. They tell us nothing about the real world of disease research and treatment.
As Siddhartha Mukherjee wrote in The Gene, “Memories sharpen the past; it is reality that decays.”