In the United States, a linguistic movement has taken hold. People-first language is considered by many to be the most respectful and appropriate way to refer to those who were once called disabled, handicapped, or even crippled. Instead of disabled person, we are urged to say person with a disability. Instead of autistic person, we should say person with autism. And so on and so forth. I think you get the picture. The idea is to See the person first or See the person – not the disability!
I can understand where the impulse to use people-first language comes from. After all, I don’t want to be identified solely on the basis of my disabilities. If I had to choose between the two, I’d much rather be known as That loudmouth who never shuts up in class than That girl with the walker. (As an aside, the proper way to say that is That girl who uses a walker. It makes it sound much less like my walker is just attached to me and follows me around.) I want people to see me as a whole person, not just a disabled person.
But at the same time, there’s no way to see the person without the disability. A person is not a blank canvas that other things are added onto. From the moment we’re born, perhaps even from the moment we’re conceived, our experiences shape us and make us who we are. My disability, among many other things, is integrated into who I am. There is no way to separate me from my disability. It’s not as if “person” is a standard action figure, while “disability” comes in the accessory pack designed to make you spend more money. That’s the image that comes to mind when I hear person with a disability.
Though person-first language is designed to promote respect, the concept is based on the idea that disability is something negative, something that you shouldn’t want to see. After all, no one tells me that I should call myself a person with femaleness or a person with Jewishness. I’m a Jewish woman. No one questions that. Yet when I dare to call myself a disabled person, it seems the whole world turns upside down. That’s because gender and religion are seen as neutral, if not positive, characteristics. The idea of separating the disability from the person stems from the idea that disability is something you should want to have separated from you, like a rotten tooth that needs to be pulled out.
Disability is only negative because society makes it so. For sure, there are negative aspects of my disability. (For the sake of simplicity, I’m focusing solely on my physical disability, which is both the most visible and the most integrated into my being.) Chronic pain and fatigue are no picnic. But for the most part, my disability is just another thread in the tapestry of my life. Pull it and the whole thing might unravel. Pull it and you might get an ugly hole where something beautiful once was.
Identity-first language is founded upon the idea of the social model of disability. In a nutshell, the social model says that though our impairments (our diagnostic, medical conditions) may limit us in some ways, it is the inaccessibility of society that actually disables us and renders us unable to function. The most basic example is wheelchair accessibility. If I am using my wheelchair and I can’t go to a restaurant because it doesn’t have a ramp, am I disabled by my cerebral palsy or am I disabled by the inaccessibility of the restaurant?
If that restaurant has a ramp, I am able to function perfectly within that situation. I am able to go in, sit at a table, order my food, eat it, and pay, just like everyone else. My wheelchair is not the problem. The inaccessibility of the restaurant is. Saying that I am disabled more accurately highlights the complex biosocial reality of disability. I am not merely a person existing with a label; I am constantly disabled and enabled by the interplay of my body and the environment.
To be sure, neither identity-first nor people-first language approaches should be applied broadly. There are some communities that strongly prefer people-first language. Those with intellectual disabilities usually prefer people-first language, and there are advocacy groups mainly run by and for people with intellectual disabilities around the globe called People First that date back to the 1970s. Conversely, the Autistic and Deaf communities both strongly prefer identity-first language for reasons that I’ve outlined above, as well as from a sense of disability pride.
But by no means are these generalizations hard and fast rules. In every community, there will always be exceptions. When in doubt, ask the person how they like to be described. Never make an assumption if you are in a position to ask. If you are referring to a broad community or to a person you can’t ask, I suggest you default to the language most commonly used by members of that community – not the language commonly used by parents or allies. Language also varies depending on whether the person identifies as being part of disability culture or not. “Big-D” Deaf people use a capital D to refer to themselves as being part of the Deaf culture, and use “little-d” deaf to refer to the medical condition of deafness. The Autistic community has, to some extent, adopted the capital and lowercase letter method as well, and some people use the capital and lowercase method to refer to disability/Disability generally.
The issue of identity-first versus people-first language is one that has been thoroughly explored. Jim Sinclair’s “Why I Dislike People First Language” is one of the oldest pieces on the subject and was the first I ever read. The Autistic Self Advocacy Network has an entire page dedicated to identity first language, written by the Autistic Hoya, Lydia Brown. Two of my friends have written great pieces on their preference for identity-first language. Emily Ladau’s piece in the compilation Criptiques is wonderful, and I urge everyone to buy the book and read not just her piece but the others as well. (And I’m not just saying that because I was also a contributor!) Kathleen Downes at The Squeaky Wheelchair also has a great post on identity-first language.
But aside from those two, I’ve seen very little in the discussion of identity-first language from the physically disabled community. Perhaps it’s because many of us have very visible disabilities and so are often judged solely by our disability characteristics. Perhaps it’s because many people with physical disabilities don’t see their disabilities as part of their identity. Whatever the reason, I’m speaking up now, because I don’t see many others in my community tackling this important issue.
Do you identify as a person with a disability or as a disabled person? What language do you use and why? I’m curious to know other people’s opinions!
[Headline image: The photograph shows a person in a wheelchair, seen from the back and side. The person is wearing a red t-shirt and a pair of black shorts with red and white trim. The back of the wheelchair is black with a black, red, and white backpack attached to it. The wheels are black with red through the center. Next to the person is a gray service dog wearing a blue pouch and a red bandanna.]