In the new Netflix series Atypical, a father attends a support group meeting for parents of children with autism. As he begins to describe how well his son has been doing lately as an “autistic person,” he is gently interrupted by the support group leader. She stresses the importance of him using “people-first” language, that his son is not an autistic person, but rather a person with autism. When she intercedes again to remind him that his son can’t get “better” from autism, he stares at her blankly while his wife (who is more well-versed in the appropriate vocabulary) interjects with an explanation of their son’s recent progress using replacement behaviors.
The scene is played to parodic effect—the support group leader comes across as a pretentious pedant who pays more sensitivity to correct language use than to an exasperated father who is struggling to connect with his son. The insistence on using people-first language is seen as a distraction from what is really being communicated, and I couldn’t help but be reminded of similar reactions from authors over this same issue. How many times as a manuscript editor have I rolled my eyes when I’ve seen the phrase “the patient was diagnosed with” and known I’d have to significantly restructure the sentence? How many authors have been annoyed with the sea of red strikethroughs they encounter because their article is filled with “autistic patients” or “diabetics ” or “the disabled”?
But yet, whenever I explain to authors that AMA style is strict about not defining patients by their illnesses or survivors by their experiences, they get it. “Oh yeah,” they say, “that makes sense.” They understand that it’s important for patients to have autonomy and a sense of personhood, that it’s important to recognize that behind the data are human beings who trying to live their lives while facing all sorts of experiences, of which illness may only be one.
There has been considerable pushback from politicians, corporate leaders, and even comedians against what is seen as a culture of “political correctness,” with people bemoaning that there is a social imperative to use what they see as arbitrary substitutions for words that are considered insensitive or offensive. But what good word nerds know (and manuscript editors take that title with pride) is that words and the way we choose to use them are symbolic and communicate more than their definitions. And that is why AMA style is committed to using its reputation as an industry standard to set a tone of inclusion and sensitivity for medical discourse, a tone that states that these values are not only accepted but required.—Amanda Ehrhardt
Initially, I found the ‘politically correct’ language recommended by style guides to be an annoyance—a pedantic quirk that hinders brevity. And I can see why authors, most of whom are physicians and trial investigators, don’t ‘get it’. The reason is that they look at a patient with a disease as a problem to be solved (a case). Without this perspective, they cannot treat the disease objectively, and this comes across in the writing, which looks cold and insensitive.
As editors, we are bound by our knowledge of good practices, and we find ourselves at multiple crossroads when editing a manuscript. Although these standards are required, it is up to us to choose the path based on a good judgement of what the manuscript needs.