An ongoing dialogue on HIV/AIDS, infectious diseases,
February 6th, 2023
New Ways with Language — Some to Adopt, Some to Question
Back in my second year of medical school, my classmate and good friend John and I had a memorable teacher in our Introduction to Clinical Medicine course, someone we still talk about today. A general internist with a specialty in addiction, he was a big bear of a guy sporting a ponytail, beard, open-necked shirts (sometimes of the Hawaiian variety) and beads.
You know those stereotypes of Boston academic physicians with bow ties and tweeds? The opposite of that.
One of his emphatic messages was to stop labeling people by their diseases. “He’s not an alcoholic,” he’d say, after we’d done an awkward medical student history and physical at a local inpatient detox center. “He’s a person with alcoholism. That’s the disease he has, not the person he is.”
It wasn’t just for people with addictions. He said the same was true for people with diabetes, or asthma, or anything. They’re people, not their diseases.
At the time — the mid 1980s — this was not at all a commonly held view in medicine. Our other teachers, and certainly the residents we looked up to, bandied about disease-first labels all the time. Alcoholic, IVDA (intravenous drug addict), chronic lunger, end-stage AIDS victim, schizophrenic, sickler, and on and on.
Even worse, these labels could come with a room or bed number. “Shooter in 4 needs two sets of blood cultures.” Cringe.
Fast-forward to today, and I’m delighted to say that our teacher was onto something important by not wanting to label people with their disease. The language we once used seems not only unnecessary, but stigmatizing.
In an effort to move away from such labels, Dr. Sara Bares has written a wonderful viewpoint in Clinical Infectious Diseases on this very topic. She kindly invited me and others to collaborate, but she did the bulk of the very fine writing. I highly recommend it.
In fact, my main contribution was to acknowledge that change can be hard — and harder for those of us accustomed to language done a certain way. For this particular effort, however, I’m convinced the challenge is worth it. Clinicians and researchers should do whatever we can to avoid using stigmatizing language for our patients with their diseases, whatever they might be.
I confess to having the opposite reaction to certain other requested changes in language, especially those that seem driven more by fashion or, even worse, virtue signaling. Such requested changes, while well meaning, come off as peculiar; at best, they’re even unintentionally funny (in the “ha ha” definition). For example, the first time the term “chestfeeding” crossed my path (over the more anatomically correct “breastfeeding”), I thought it was a joke.
What is accomplished by this awkward change, or even more important, what is lost? Isn’t that what mammals do as one of their core nurturing traits? Use their breasts to feed their young? And shouldn’t we be encouraging and facilitating breastfeeding (over formula or expressed milk feeding) whenever possible as optimal for infant health? Cripes, the origin of the word mammals is even named after this function.
At worst, extreme mandated changes in language come across as dogmatic and performative, serving only to criticize, alienate and anger people who won’t adopt them. They are fodder for political opponents, using examples to show how out of touch the other party might be.
In the same week that Sara published her paper on people-first language, Nicholas Kristof of the New York Times wrote about the effect of different and more extreme language changes. He cites, of course “chestfeeding,” and includes a whole panoply of other bewildering terms for consideration.
While this new terminology is meant to be inclusive, it bewilders and alienates millions of Americans. It creates an in-group of educated elites fluent in terms like BIPOC and A.A.P.I. and a larger out-group of baffled and offended voters, expanding the gulf between well-educated liberals and the 62 percent of Americans 25 or older who lack a bachelor’s degree — which is why Republicans like Ron DeSantis have seized upon all things woke.
It’s no wonder that one of my colleagues — who could not be more humanistic and thoughtful in both her clinical practice and actions — told me that in an upcoming seminar she’s leading on fighting racism in the hospital, her biggest fear is “when, not if, I mess up the latest terminology.”
Language evolves. It’s time to welcome non-stigmatizing language in medicine and research, but that doesn’t mean all medical terminology needs to flip to the latest fashion. In other words, Dr. Beads-with-Ponytail was 100% right not calling people by their diseases — but I doubt he’d ever say “chestfeeding.”