Tara Haelle, the Association of Health Care Journalists medical studies core topic leader, recently wrote a post on the AHCJ’s blog, Covering Health, on how to use respectful language when it comes to how we identify the people who are living with various conditions or disabilities.
Haelle’s post was in response to a question 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”).
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.
This is also true for the importance of person-first language when discussing addiction. “People who use intravenous drugs” or “woman with opioid use disorder” or “person with alcohol addiction,” as opposed to “drug users” or “opioid addict” or “alcoholic.”
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 Haelle prioritizes 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. 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 Haelle, 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 Haelle has relied heavily on the Autistic Self Advocacy Network. Many 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 one can most frequently run into challenges.
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.
Article adapted from AHCJ blog post by Tara Haelle. July 31, 2019.