Freelance journalist Cassandra Willyard recently asked me on Twitter about resources on the use of appropriate, respectful language when it comes to how we identify the people who are living with various conditions or disabilities.
It was in response to an excellent question by biomedical research writer Kim Krieger about the acceptability of referring to someone with a condition as a descriptor, such as “epileptic child” or “diabetic adults.” Those constructions are called “identity-first” language, as opposed to “person-first” language where the person literally comes first: “children with epilepsy” and “adults with diabetes.”
The use or not of person-first language is a sensitive, important discussion, not unlike discussion of appropriate and respectful gender terminology in stories involving individuals who self-identify with a non-binary gender (something other than “male” or “female”). I was glad to see someone on Twitter asking about it, revealing the thoughtfulness of thinking responsibly about how powerful language is and the ethical importance of getting it right. It’s a discussion among researchers as well.
This is a particularly relevant concern in the disability community, where a long history of erasure, exploitation, stigma and misunderstanding has led to strong emotions about how people with disabilities — or disabled people, depending on what someone prefers — are identified and discussed. The Disability Language Style Guide is helpful for writing about disability in general.
I’ve written before about some do’s and don’ts when interviewing people with disabilities, and someone asked me then about my use of “autistic adult,” a non-person-first construction. It was a valid question, especially since I’d written only a few months earlier about the importance of person-first language when discussing addiction.
I’ll recap here what I tweeted with three caveats:
- First, there aren’t hard, fast rules with this issue except to always ask your sources about their preferences, even if you don’t know if you can accommodate them. (If you don’t think you can, or find out later you can’t, let them know.)
- Second, there’s often tension between a person’s or community’s preferences and a publication’s style guide; it’s worth having discussions about this with your editor when it comes up.
- Third, I have certain disabilities, but I cannot and do not speak for any disability or patient communities at large, even when mentioning what I’ve learned from specific communities to date. I’m sharing what I’ve gleaned from talking with advocates in these communities, but I remain open to learning and adapting as things change.
As is already clear, person-first language is a complex issue depending on the condition and the person. Usually, with clear diseases like epilepsy and diabetes, it’s always best to use person-first language: men with diabetes, children with epilepsy. Although some controversy exists about obesity as a disease state, person-first language is also recommended: “man with obesity” is preferred to “obese man.”
With mental health disorders, it’s usually best to use person-first: a man with schizophrenia (not schizophrenic) or woman with bipolar disorder (not a bipolar woman). However, when you get to conditions that relate to different ways of perceiving or interacting with the world, person-first is often discouraged by those in that community, the source I prioritize highest. Two examples are autism and deafness.
Most deaf people prefer identity-first language, not person-first, and they reject “hearing impaired” because many do not perceive an inability to hear as a deficit. (Deaf also should sometimes be capitalized.) It’s always best to confirm with the person if there’s one person involved. If there isn’t, then I default to what the community at large generally uses. For me, a community’s preference trumps even “official” sources, since agencies such as the CDC do not always recommend what the community itself prefers (e.g., deafness here.)
Autism is trickier, and I’ve relied heavily on the Autistic Self Advocacy Network, whose website features a thoughtful essay by Lydia Brown (original here) on the thorniness of this question in autism communities. In my experience, most autistic people see autism as an intrinsic part of their identity — a disability, yes, but one that also confers benefits and is simply a different way of perceiving and interacting with the world. This is where I most frequently run into challenges with editorial style guides and have discussions with my editor about using what the person prefers, as I did with this story.
But this preference isn’t across the board, as the ASAN essay notes. Some may prefer “person with autism,” and sometimes parents prefer “child with autism” while their child prefers “autistic child.” Yet the former can (but not always) connote a perception of autism as an unfortunate disorder or disease that someone wants to be cured while the latter connotes “aspect of my identity that is important to my sense of self.” Hence the importance of asking.
When writing about autism in general, I default to “autistic people.” If I’m featuring a specific person, I ask their preference. It’s important to ask them (not their parent or guardian if your subject is a minor) unless they are non-verbal and you have no other way of asking them.
When publications insist on “people with autism,” I show them ASAN materials and push to use what the community (or person) generally prefers. Though not related to disabilities, I similarly ask about the use of “black” vs. “African-American” and “Latino/a/x vs. Hispanic” when writing about people of color.
- AHCJ President Ivan Oransky, M.D., wrote about this topic last year. (Scroll down for the English version.)
Typically, people with diabetes prefer that that descriptor and are are opposed to diabetic.