I was on Facebook the other day when I came across an infographic shared by an acquaintance of mine. It purported to list the correct language to use when referring to people with various kinds of disabilities: “person with a disability” instead of “disabled person,” “person with autism” instead of “autistic person,” and so on. If you clicked on the picture, though, you would see that some of the top comments were informing the makers of the infographic that many disabled people actually prefer the opposite. So what’s behind this divide? And what’s “right”?
This is the person-first versus identity-first language debate, and unfortunately, it’s not a simple issue to unravel.
Person-first language (PFL) refers to the movement to use words that emphasize the personhood of the disabled person. The “person” word literally comes first, as in “person with a disability,” “boy with diabetes,” or “woman with autism.” Identity-first language (IFL) refers to language that uses these words as grammatical adjectives, putting the identity adjective first. Thus, it would be “disabled person,” “diabetic boy,” or “autistic woman.”
Proponents of person-first language claim that it humanizes people and prevents discrimination by dissociating the person from the stigmatized disability. PFL was developed by disability activists and started to gain traction in the 1990s, and it has since been the subject of many campaigns and professional recommendations for language use.
Studies have found that people hold more negative feelings about others described using IFL instead of PFL. For example, researchers at the Ohio State University found that describing a group as “the mentally ill” was perceived more negatively than “people with mental illness.” PFL is touted as emphasizing the person as someone who just happens to have a disability, indicating they are separable and that the disability is not the defining feature of the person.
Proponents of identity-first language say that separating the person from the disability is sometimes impossible and that using PFL only furthers the idea that disability words are dirty words. The movement for IFL has been about embracing these words as identities for members of the disability community, similar to the power in being able to identify as gay or black.
Disability scholars argue that PFL’s limited usage just increases stigma by clearly marking disabled people as “different,” since PFL isn’t used in the same situations for non-disabled people or for less stigmatized disabilities. For example, a researcher at the University of Wisconsin-Madison found that PFL was used predominantly for highly stigmatized intellectual disabilities, while IFL was still mostly used for physical disabilities and, of course, for those without disabilities.
I find it interesting that studies used to support PFL all look at comparisons like “people with epilepsy” versus “epileptics.” That’s not really person-first compared to identity-first, that’s person-first compared to person-less. Would a study comparing “people with epilepsy” to “epileptic people” find the same results? Is the key here including the person in the term (radical, I know), not the order it’s included? I couldn’t find a study that looked at this, but it might be telling.
Really, though, respect is the most important piece to this puzzle. Many disabled people are frustrated that their voices aren’t being listened to. Some prominent organizations run by non-disabled people continue to push for PFL despite disabled people, the communities they purport to serve, asking for IFL. It’s a problem when disabled people are being corrected by non-disabled people in the language they use to refer to themselves.
Personally, I think that if the idea is that disability is viewed negatively, and we don't want the disabled person to be viewed negatively with the disability, we need to change how we think about disability, not police the finer points of language. We need to address the source of the stigma, not accommodate it with workarounds. PFL just hides it behind grammar and makes it easier for non-disabled people to ignore.
Additionally, “person with a disability” is supposed to separate the person from the disability by making them two separate entities, so that the person can be taken without the disability. For people for whom their disability is part of who they are and how they experience the world, how is that possible? Implying that we should separate them implies that a disabled person isn’t good enough while they have their disability. It implies that the disability is a lesser part of the person and that they'd be better without it, which often isn’t possible, may not be wanted, and is just generally untrue.
PFL and the debate around it also make disability into an illegitimate identity, and I spent long enough feeling that way on my own without others trying to push it on me. No one debates whether it's “black person” or “person with black skin,” “Muslim person” or “person with Islamic religion,” “gay person” or “person with attraction to the same gender.” Those all sound ridiculous, cringe-worthy, and even possibly offensive, and they don’t sound much like identities when the constructions get mangled. “Disabled” is an identity like the rest of these, which is something that non-disabled people who force PFL don't understand.
Even if studies were to show that PFL is viewed more positively, the rhetoric used to support PFL at this point is harmful to disabled people and their identities. When it comes down to it, though, I don’t see satisfactory studies showing that the difference in construction means that much psychologically. The Sapir-Whorf hypothesis, the linguistic premise that the language we speak determines how we think, is often largely overstated. Is this another case of that? We need more studies to know, and in the meantime, we need to stop attacking disabled identities.
While there isn’t one correct answer, many disabled people prefer and freely use identity-first language as a sign of a powerful identity and community. Just look at the Coalition of Disabled and Neurodivergent Students on our campus. What’s really most important, though, is using the language that the disabled person you're referring to prefers, whether it's person-first or identity-first. Arguing with or correcting someone’s usage, especially if you’re not disabled, is disrespectful and ableist, no matter how well-intentioned.
At the end of the day, I love what IFL stands for. Reclaiming “disabled” and similar words as badges of identity? Fighting the stigma of being disabled? Affirming the worth of disabled people? Heck yeah! (Or does it have to be Tech yeah?)
In practice, though, I find myself using both in conversation and casual writing, although I default to IFL. It’s silly that I have to police my use of what my brain considers synonyms because we’ve turned them into signs of two different teams (when neither is inherently negative or offensive). This isn’t a competition. This should be a unified effort for the good of all disabled people.
So in conclusion, listen to disabled people.
It’s that simple.