An ongoing dialogue on HIV/AIDS, infectious diseases,
February 6th, 2023
New Ways with Language — Some to Adopt, Some to Question
Mary Cassatt, Young Mother, 1888. US Postal Service stamp, 2003.
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.
His concern?
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.”
16 Responses to “New Ways with Language — Some to Adopt, Some to Question”
Paul E. Sax, MD
Contributing Editor
NEJM Journal Watch
Infectious Diseases
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I’ve recently seen in the NEJM “people who are pregnant”. I thought maybe I missed out on some new medical discovery.
Thanks Paul for another provocative piece and I will still need to read Dr. Bares piece.
I was confronted with this yesterday in reading some new updates to the DHHS HIV Prenatal guidelines and finding myself at age 63 now having to now say “Pregnant Person” — but I suppose I eventually will get used to this – but let’s be thoughtful and careful and not create more fodder for our Republican friends – of which I have quite a few :).
Great CID article.
Regarding the second half of your blog, I disagree with Kristof that our sometimes clumsy attempts to adapt to sometimes clumsy new terminology has an effect on the amount or intensity of Republican politicians’ attacks. I think engaging in that second-order reactionary dance is hopeless, fraught, and distracts everybody from their brazen ongoing attempts to punish trans people for who they are and criminalize their lives. Holding back a snicker on the off-chance an intern or patient says “chestfeed” will not conjure a DeSantis inaugural parade on the floor.
Not only that, I think Kristof gives people without college degrees short shrift in his attempt to empathize with them. A few new terms they’ll probably never hear nor use will not incapacitate with befuddlement those not already lost to Fox News.
All that is to say: no need for us to add to the op-ed chorus of hardy-har-hars.
Interesting article.
I enjoyed and learned from it. I am sharing it with colleagues and post graduate students in our Manipal College of Medical Sciences, Pokhara, Nepal and urging them to pay attention to this aspect.
I try to avoid being an early adopter when it comes to these terminology changes, waiting to see if they stand the test of time or are just fads concocted by academics and their grad students. Will we still be talking about “chest feeding” in 2025? If so, I’ll make the change then. I jumped on the “Latinx” bandwagon too soon, only to find out that it’s unpopular with most Latinos/Latinas (not to mention that Spanish words don’t end in “x”). “People of color,” and especially the related “POC” and “BIPOC,” had short half-lives and seem to be on their way out, so I’m glad I waited.
The Stanford “Elimination of Harmful Language Initiative” (highly recommended reading!) tells me I should no longer use the words “crazy,” “tone-deaf,” “walk-in,” “brave,” “chief,” “seminal, “gangbusters,” “cakewalk,” or “stupid.” I can’t talk about “killing two birds with one stone” (unless I actually did it). I can’t say “circle the wagons”–a cliché I’ve tried to avoid…until now!
Of course some changes make intrinsic sense right away. I didn’t wait to switch from “slaves” to “enslaved people,” because the new terminology, though more cumbersome, reflects that being enslaved is not an identity but a condition imposed by others. Your examples from our training years, when patients were referred to by their diseases in derogatory ways, are very apt.
Here in New Mexico, I don’t think our large native population (who often refer to themselves as “Indians,” by the way) will object to my using the word “brave” as a synonym for “courageous.”
Thanks for the link to that article, Paul. I have been working on improving language in the patho/pharm class I teach for undergrad nursing students. Switching from saying “diabetic” to “person/people with diabetes” has not been easy, after treating people with diabetes for years, but I think I am 99% of the way there, with an occasional inadvertent return to the old language. Reminding students that someone is not “an alcoholic”, but “someone with an alcohol use disorder” and similar language changes are ongoing, but important, tasks of teaching. Those sorts of changes imply respect for the person our patient is, not merely a focus on their disease. And while we’re at it, can we lose horrible terms like “pink puffer” and “blue bloater” to describe people with COPD? How about losing “buffalo hump” to describe the posterior cervical fat deposition that someone with Cushing’s Disease can have? Those terms make me shudder at the level of disrespect they imply, but there they are — in the most current versions of their textbook, as I point out to my students!
This post is my favorite!
The bearded role model attending was way ahead of his time, with timeless and important messages for physicians in training. You may be aware of a medical education term referred to as the “hidden curriculum.” The hidden curriculum is what the trainees hear and see when interacting with faculty members, senior and chief residents and others in leadership positions. These observed behaviors and words may be disparaging and/or unprofessional but can unfortunately be adopted/incorporated by young medical learners, who may assume that these behaviors are “okay”. One example that comes to mind is hearing a faculty member demean an outside/referring physician (“LMD”). The learner may think this kind of behavior is “okay”, which perpetuates the behavior, which is subsequently passed on to the next generation.
The discussion of language was also spot on. The term Latinx comes to mind. I have brought this up with several colleagues of Latin/Hispanic descent, who find the term bewildering, odd and silly. According to the Pew Research Center, one in four have heard of the word, but just 3% actually use it!
Thanks for continuing to share your clinical and non-clinical pearls with the wider community. I’m not sure how you carve out the time to put these posts together, given your astonishingly busy life.
Hope 2023 treats you well, Paul.
Regarding the poll by Pew on “Latinx”, that poll was done in 2020. A later poll (March 2021) by Axios-Ipsos in partnership with Noticias Telemundo showed that 53% of Mexican Americans, 47% of Puerto Ricans and 42% of Cubans (the three major Latino/a groups in the US) approved of the term. Acceptance of “Latinx” was particularly high among the younger respondents.
Dr.Sax, I’m usually a fan, but this article leaves me cold. Trans people are under attack in your country, the UK, and elsewhere, and your article implicitly singles them out without qualification. This kind of casual disregard should be familiar and repugnant to you, given your long service to PLWH (a term unlikely to gain traction in all corners of the country– will you abandon it?) “Chestfeeding” may not be perfect terminology, but I would suggest a different term for you to eliminate from your vocabulary: “virtue signalling.” Try an exact synonym such as “demonstrating respect.”
Chestfeeding…
I fail to understand who could be offended by the word breastfeeding, or find the word divisive or demeaning.
Is it because I’m French speaking that I don’t understand?
Can someone enlighten me?
Thanks in advance.
I’m not sure about using chestfeeding (because it will be unfamiliar to most people), but it did seem odd to discuss it without any reference to the reason its use is suggested – because many trans men who lactate say they prefer it.
Are these 3 groups the majority though? The term feels to many as an attempt to anglicize our identity, to water it down. It is very frequent for younger people to want to just blend in, assimilate, children-adolescents might even have little interest in learning Spanish; but as they mature, they appreciate the value of our culture, things change. If you are not a Latino, it’s best not to try to over-read into related surveys.
I am also a big fan of your work and your blog, and I second Dr. Burgess’s comment about the implicit transphobia in your need to spend an entire post singling out a term that you may not understand but is preferred by many people who feed their baby from their body and don’t identify as female. Why is breastfeeding more anatomically correct than chest feeding (you mention the word mammal coming from mammary, but that root isn’t even in breastfeeding?) And why is anatomical correctness a primary value when we’re discussing inclusive language that will allow transgender and non binary individuals to feel more seen and respected in medicine, where they are not only neglected but often face outright abuse? I know my language isn’t perfect, and I’m open to it evolving, but I currently prefer breast/chest feeding to acknowledge the multiple terms that people might use. It’s hard, but we are capable of listening, learning, and evolving, without being worried about being “caught up in a fad” as many of the comments suggest.
On a related subject, when I was a third-year psychiaty resident in the early 80’s, I was assigned to an oncology outpatient clinic as my rotation in consult-liaison psychiatry. I recall attending weekly clinicial meetings of the clinical faculty and staff where patients’ treatments were discussed, and being quite taken aback at hearing, for example, “Mrs. Jones failed methotrexate”; or “Mr. Smith failed vincristine”. I timidly suggested to the staff that their phrasing came across as if they were blaming the patients for their lack of response, rather than that it was our drugs that “failed” to improve the patients’ conditions, to my discomfort, they seemed a bit chastened by my comment. We physicians often have a hard time accepting that our treatments do fail at times to adequately help our patients, and the kind of language the staff routinely used was clearly a way of distancing themselves from their own feelings of helplessness and inadequacy in the face of heir patients’ resistant cancers. Language really matters. Even when labels and turns of phrases start out as time-saving shortcuts for busy physicians sharing clinical information, they easily end up thoughtlessly dehumanizing and stigmatizing patients–as Dr. Sax noted–and disconnecting us physicians from our capacity for empathy.
As someone who has worked in both HIV medicine and gender affirming care, I’ve been really quite surprised at how behind HIV providers are in inclusive language use. There is a known and enormous gap in care and outcomes between cis white men and trans black women. There is a known and enormous research void for transmasculine people living with HIV.
Language might be virtue signaling, but it can also be safety-signaling. Could part of that care gap be because some HIV providers think language that signals safety is a joke? Inclusive language brings people in to care, and thereby has the power to save lives. We are ostensibly smart people, we can handle changing language as it evolves, because it always will.
Jo
If since you are so on board with changing language to avoid offense, here is one that I would suggest you may want to add to your list.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8560107/
https://www.amjmed.com/article/S0002-9343(21)00442-3/fulltext