inclusive language

Race and Ethnicity

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One of my favorite chapters in the AMA Manual of Style is about inclusive language, particularly the section about race/ethnicity (11.10.2). Race/ethnicity is a complicated topic because these categories have cultural and biological implications. In scientific research, it is important to specify race/ethnicity of study participants to understand the generalizability of the results. AMA Style instructs authors to indicate who classified the race/ethnicity of study participants (ie, the investigator or the participant).

Recently, I edited a research article with a table of participant characteristics that listed race/ethnicity as white, black/African American, Asian, and other. AMA Style notes that Asian and Asian American are not equivalent or interchangeable and that authors can be queried to clarify. All participants in this study were from the United States, so I asked the author about using Asian American instead of Asian. The author declined the edit, so Asian it stayed.

The editor in me shrugged it off. Editing is meant to serve authors and their research, and unless something is inaccurate, I have no problem reverting to the author’s original wording. After all, even the CDC website uses Asian and Asian American interchangeably.

The noneditor side of me, though—the child of immigrants who grew up in the United States and spent childhood summers in Hong Kong and Taiwan—was frustrated. I have been told I’m either not Asian enough or not American enough, and I try to explain that I’m both. I’m Asian American.

(As a sidebar, I also want to point out that black/African American presents its own problems. Many researchers do include non-Hispanic black, but where does that leave Afro-Latinx? This could be a whole other blog post.)

Of course, I understand that it may be exhausting to list out all the racial/ethnic groups in a table, especially considering page limits. I do appreciate when authors list more specific racial/ethnic groups, even if for many of them, n = 0. Any type of representation is a big step. However, I’ve also seen manuscripts in which the only race designations are white and nonwhite. The AMA Manual of Style notes that we should avoid using “non-” (eg, white and nonwhite participants) because it is a nonspecific “convenience” grouping. Instead, editors can query the author about using a specific race/ethnicity or using multiracial or people of color to address the heterogeneous ethnic background of many people. As an editor, a human, or even a potential study participant, I would self-report my race/ethnicity as Asian American or a person of color but never as nonwhite.—Iris Y. Lo

Disability and Language

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I recently found myself in the middle of an intense inter-community debate regarding whether the term “disabled people” or “people with disabilities” should be used when speaking of people who have disabilities. I personally prefer to describe myself as a person with a disability (hard-of-hearing, to be exact), but there are many people within the disability community who object to the term and would describe themselves as disabled people. As that article highlights:

The description “disabled people” is preferred by people who follow the social model of disability, which prefers the term “impairment” to describe our conditions and argues that “disability” is caused by barriers put in place by society to prevent people with impairments accessing society “normally.’”

This is certainly true, but the barriers society has put in place regarding disability are often not fully realized by most people. I’ve lost count of how many times someone claims they “don’t need a microphone,” ignoring hard-of-hearing folks who won’t be able to hear without a microphone no matter how loudly the speaker projects. Unfortunately, society as a whole still views disability as a negative thing. The AMA Manual of Style combats such negativity by emphasizing “people-first” language. The style guide’s section on inclusive language advises writers to “avoid labeling (and thus equating) people with their disabilities or diseases (eg, the blind, schizophrenics, epileptics). Instead, put the person first.” In describing myself as a person with a disability, rather than a disabled person, I avoid defining myself solely by my hearing loss (not to mention the negative connotations that society has given the term “disabled”).  The same must be done when discussing patients or study participants. Avoid using phrases such as “confined to a wheelchair,” which implies that the person is somehow limited or by their wheelchair use. Instead, “uses a wheelchair” is preferable.

It is similarly important to avoid words or phrases that imply helplessness on the part of people who have experienced illness or trauma. For this reason, the style guide advises against using the term “victim”: instead of “victim of trauma” or “stroke victim,” use “survivor of trauma” or “person who has had a stroke.”

Use of people-first language and avoidance of emotion-laden terms such as “suffering” and “victim” offer patients autonomy and dignity even as they’re being written about anonymously in a journal publication that thousands of people read every day.—Suzanne Walker