A person with disabilities. A disabled person.
At first glance, those two phrases might seem synonymous. They both convey the same information – a person who, in some way, form, or fashion, experiences the world through a disabled lens.
And yet, to the people who are doing the experiencing, the two phrases are often worlds apart. They have connotations. They have contexts. They have histories. And many people in the disability community have very strong opinions on which they prefer. (And many people outside the disability have very strong opinions on which they believe should be used, as well.)
This is the current situation about identification regarding disability status, especially self-identification: person-first language versus identity-first language.
Before we get into the nitty gritty, some background. If you’re not in the disability community, or you don’t have a friend or loved one in the disability community, you might not know anything about person-first or identity-first language. What do those terms even mean?
Person-first language (a person with a disability) “puts the person before the disability, and describes what a person has, not who a person is.” It emerged out of the AIDS pandemic as a way to humanize patients with AIDS, who were often seen as rather less than human by society. By changing from “AIDS patient” or “AIDS victim” to “person with AIDS,” advocates were able to reframe the situation, reminding the audience that these were people, people who just happened to have AIDS.
Identity-first language (a disabled person), on the other hand, arose as a response to person-first language. It challenges the idea that there is something inherently negative about a disability, and that for many, disability is a part of our identity. This is especially true in communities that have developed a sense of culture around their identity, such as the Deaf community.
Both terminologies seem to have arisen from the need to address disabled communities respectfully, and to avoid outdated, harmful terms that may have been used in the past. Language matters, and the way we refer to people shapes the way we think about those people. So it’s very important to understand just how to refer to people.
Person-first? Or identity-first?
Here’s the thing: I’m disabled. Don’t call me a person with disabilities, please.
I first learned about this question when I discovered my autism, a few years ago. I was told I “have high-functioning autism” (and, for the record, functioning labels are a whole other can of worms). That made sense to me – I had autism. That was how I always heard it phrased. Yet I had also heard “autistic” used to describe someone. I had autism. I was autistic. What was the difference? Both made sense. Both seemed to say the same thing.
Then I got more involved with the autistic community online – which, by the way, was a huge eye-opener that helped me understand myself and my identity so much! I highly recommend searching out online communities to help develop your sense of self – and learned more about how the autistic community thinks about itself. And, much like the Deaf community, the autistic community is more than just a loosely grouped set of individuals with a shared difference from the norm. No, the autistic community is a community. There is a culture here.
And it means something to be autistic. To call someone a “person with autism,” rather than an “autistic person,” removes them from that sense of community and culture. As one autistic advocate put it, using person-first language “suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.” When you use person-first language to describe someone in the autistic community, you are shaving away part of their identity, removing a part of who they are.
It was through the autistic community’s point of view about language and identity that I was able to understand the linguistic importance here. Disability is a part of my identity. I am disabled. This is a fact of my life. This shapes how I view and experience the world, just as much as the fact that I am queer, the fact that I am a woman, the fact that I am white… these are facts. I would never call myself “a person with queerness,” so why would I call myself “a person with disabilities”?
Now, I want to be clear, that the disability community is not a monolith. The most important thing to note is that self-identification is paramount. One of the trickiest things in the autistic community, for example, is that person-first language is preferred by autistic advocates (especially parents of autistic children) while identity-first language is preferred by autistic people themselves – hence why the ASAN (Autistic Self-Advocacy Network) espouses identity-first language. But not all communities like identity-first. The intellectual disability community, for example, prefers person-first language. In fact, their self-advocacy originated the practice of person-first language in Sweden in the 1970s, and the organization People First continues to advocate for person-first language today.
How do you know what to do, when you are talking to or describing someone? It depends, as all things do, on context. In a professional or legal setting, you might be best suited using person-first language, as it is the language used in the Americans With Disabilities Act, so you’ll fall in line with the standard. In an academic setting, especially a crip theory class, you’d best read into what community you’re discussing and what they prefer. And if you’re talking to someone you know who is disabled, ask them! They’ll probably be happy that you’re taking their preferences into consideration. And hey, at this point, you’re miles ahead of most people just knowing about this debate!
- Office of Disability Rights – People First Language
- The Denver Principles (1983)
- Writing Respectfully: Person-First and Identity-First Language
- ASAN – Functioning Labels Harm Autistic People
- ASAN – Identity First Language
- I am Disabled: On Identity-First Versus People-First Language
- Advocacy Network on Disabilities – People First Language