Updated: Jul 7, 2021
By Emily Ladau
I vividly remember the first time I learned about person-first language (PFL). I was listening to a professor of special education speak to a group of students on disability “etiquette.” He handed out a sheet with rules on how to address or refer to a person if they had a disability. While lecturing, the professor seemed keen on calling me out, making me feel like a token, and prompting me to agree that when it came to disability, it was PFL or bust. I went along with it, but something didn’t sit well with me. I was born with my disability. It was news to me that calling myself a “disabled person” was an insult. It had always been just a fact of life, a part of who I was. And now, after all these years of calling myself what I am, here was an educator, who doesn’t even have a disability, telling me I had it all wrong.
At first, I shrugged it off, but I began encountering more and more people who proclaimed that PFL is the only way to show respect. So, I decided to dig deeper. And as I became more involved with a wider range of people from within the disability community, I discovered that PFL is not the only way.
There are two main types of language used to refer disability: person-first language and what is known as identity-first language (IFL). PFL as a concept originated among people who wanted to fight back against stigma. In a society that perceived disability as dehumanizing, advocates wanted those around them to remember that having a disability does not, in fact, lessen your personhood. As such, the PFL movement encouraged the use of phrases like “person with disability,” “girl with autism” or “boy who is deaf.” In speaking this way and putting the person first, it was considered a show of respect.
PFL was adopted as a general linguistic rule, moving from use by the people who initiated the movement towards heavy use by those in professional spheres. It essentially became the law of the land. Teachers, doctors, nurses, social service professionals, government officials… everyone was told that they should use only PFL. Using a term such as “disabled person?” A cardinal sin.
However, as with almost any major activism movement, PFL sparked a countermovement, known as identity-first. IFL is a linguistic concept embraced and actually preferred by countless people within the disability community. In the ideology of identity-first, “disabled” is a perfectly acceptable way for a person to identify. Instead of going out of your way to say “person with a disability,” when using IFL you would instead say “disabled person.” This is how I personally choose to identify myself. I am a disabled person.
And yet, non-disabled people largely tend to greet the idea of IFL with confusion or even anger, deeming it offensive to call someone disabled. I can’t even begin to tell you how many people I encounter who question my language choice. I realize I can’t blame them entirely, because PFL is all that many people know. It’s drilled into people’s minds, often in the form of generally well-intentioned sensitivity trainings and educational literature, as the only possible means to be respectful. But I just can’t get on board with this belief that person-first is the only way.
Consider how PFL intentionally separates a person from their disability. Although this supposedly acknowledges personhood, it also implies that “disability” or “disabled” are negative, derogatory words. In other words, disability is something society believes a person should try to dissociate from if they want to be considered a whole person. This makes it seem as though being disability is something of which you should be ashamed. PFL essentially buys into the stigma it claims to be fighting.
Also, would you ever make a point of describing someone by saying something like, for example, “a person who is Jewish” or “a person who is Asian?” Or would you just say “He’s Jewish,” or “She’s Asian?” My guess is you wouldn’t give descriptors like these a second thought. They’re not offensive words and there’s no implication of deficiency. They’re just facts about a person. Why isn’t disability treated in the same way? Disability is a state of being, a fact of life. It’s not a dirty word.
Furthermore, for so many people, “disabled” is so much more than a descriptor. It is an identity and culture unto itself. It is a source of pride. So, I am disabled. I am disabled just as much as I am a brown-haired, brown-eyed, glasses-wearing female. It is part of me. It is part of who I am.
I would be remiss if I didn’t note that IFL comes with its own set of “rules” that perhaps make it more difficult for people to fully embrace or accept.
Here’s a simple breakdown of IFL and how it’s used:
“Disability” and “disabled” are indicators of culture and identity. Thus, “disabled person” is an accepted term.
Within the Autistic community, IFL is widely preferred and often consciously chosen, because Autism is considered an identity. That is, you’d say “Autistic person” instead of “person with autism.” In this way, being autistic is regarded as a facet of one’s identity – a neurological state of being – and not as a source of shame.
A similar line of thinking is followed by many who are Deaf. While some people identify only as little-“d” deaf (referring to a physical state of being), others capitalize the “D” to indicate being Deaf as a culture and identity. So, using the principles of IFL, one would say “d/Deaf person.
These same concepts do not apply when it comes to the use of a term strictly for its medical definition. For instance, it is never okay to say something such as “Down syndrome person” or “cerebral palsy person.” Here, you’re referring to a person by diagnosis, which is perceived as dehumanizing.
Likewise when it comes to mobility equipment. It’s completely inappropriate to call someone something such as “wheelchair person.” (Sadly, I’ve been called this several times.) Instead, you would say “wheelchair user.”
On the whole, IFL isn’t actually as complicated as it seems, and its very existence is proof that language is never “one-size-fits-all.” But so many people – usually people who are not disabled – continue to demand use of PFL and correct others who do not use it. I notice this happening constantly. For instance, I’ll read articles focused on crucial issues affecting the disability community, and then I’ll read comments saying things like “great article, but how come you didn’t use person-first language?” It makes me wonder if people really think that the particulars of language are bigger than the true injustices or victories experienced by the disability community.
Moreover, if you are staunchly in the camp of PFL, I urge you to consider why constant insistence that PFL should be used may actually make some people feel disrespected, as though you are denying their identity. It is no one’s place to dictate what type of language rules a person should use, let alone what the entire disability community should use. If I encounter a person who prefers PFL, I will call them a “person with a disability.” If I encounter a person who prefers IFL, I will call them a “disabled person.” And if they have no preference, I may switch back and forth. I also switch back and forth in my writing from time to time so as to acknowledge both ways of identifying. This, I believe, is among the truest forms of disability acceptance.
Ultimately, the key is to ask, whenever possible, how a person chooses to identify, rather than making assumptions or imposing your own beliefs. Each person’s relationship to language and identity are deeply personal, and everyone’s identity choices are worthy of respect. I, who proudly chooses identity-first language and identifies as a disabled woman, am worthy of respect. Being who you choose to be – who you are – is something no language rule should ever take away.
Emily Ladau is a passionate disability rights activist, writer, storyteller, and digital communications consultant whose career began at the age of 10, when she appeared on several episodes of Sesame Street to educate children about her life with a physical disability. She serves as the Editor in Chief of the Rooted in Rights Blog, a platform dedicated to amplifying authentic narratives on the disability experience through an intersectional lens. Her writing has been published in outlets including The New York Times, SELF, Salon, Vice, and HuffPost and her first book, Demystifying Disability, is being published by Ten Speed Press, an imprint of Penguin Random House, in fall 2021. Emily has spoken before numerous audiences, from the U.S. Department of Education to the United Nations. Central to all of her work is a focus on and harnessing the power of storytelling as a tool for people to become engaged in disability and social justice issues.