Person-First Language: What It Is, and When Not To Use It9 min read

Are you con­fused about person-first lan­guage? Have you been caught in argu­ments over whether you should say “autistic person” or “person with autism”? Are you con­fused and won­dering how to avoid insulting people by acci­dent?

Let me explain how person-first lan­guage started and how it went from eti­quette to ableism.

In 1983, at the dawn of the AIDS crisis, a brave group of activists stood up at a health con­fer­ence and made a dec­la­ra­tion which would later be known as The Denver Principles.

It was a pro­found trea­tise on human rights in the med­ical pro­fes­sion which lives on to this day.

We con­demn attempts to label us as “vic­tims,” a term which implies defeat, and we are only occa­sion­ally “patients,” a term which implies pas­sivity, help­less­ness, and depen­dence upon the care of others. We are “People With AIDS.”

The Denver Principles

Thus began person–first lan­guage in a bid to refuse to be labelled a “victim.” It was brave, it was pro­found, and it was RIGHT.

Better yet, doc­tors took notice. Over the years more and more research papers referred to “people” instead of “vic­tims” or “patients.”

Person first lan­guage spread out­side of the AIDS/HIV realm and began to be used for other types of ill­nesses. It became a stan­dard part of med­ical eti­quette.

Studies have shown that abled people showed more com­pas­sion in sit­u­a­tions where someone was referred to as “a person with epilepsy” instead of “an epileptic.”  This seemed to demon­strate that person-first lan­guage helped changed per­cep­tions around dis­ability.

In 1993, the US Department of Education’s Office for Civil Rights pub­lished a mem­o­randum pro­moting person-first lan­guage and instructing its mem­bers to “avoid using phrases such as ‘the deaf,’ ‘the men­tally retarded,’ or ‘the blind.’ ”

The blind and the deaf were not happy to see the names for their con­di­tions paired with a word that was gen­er­ally rec­og­nized as an insulting slur.

Since the sev­en­ties, deaf people have been calling them­selves the Deaf. While they railed against terms such as “deaf and dumb,” they never had a problem with being called deaf. In fact, they took pride in their deaf­ness and the unique cul­ture that arose through the sharing of expe­ri­ences and signed lan­guage.

Blind people also took offense at having their med­ical con­di­tion turned into an insult.

WHEREAS, the word “blind” accu­rately and clearly describes the con­di­tion of being unable to see, as well as the con­di­tion of having such lim­ited eye­sight that alter­na­tive tech­niques are required to do effi­ciently the ordi­nary tasks of daily living that are per­formed visu­ally by those having good eye­sight; and [.….]

WHEREAS, just as an intel­li­gent person is willing to be so des­ig­nated and does not insist upon being called “a person who is intel­li­gent” and a group of bankers are happy to be called bankers and have no con­cern that they be referred to as per­sons who are in the banking busi­ness, so it is with the blind. [.…]

We believe that it is respectable to be blind, and although we have no par­tic­ular pride in the fact of our blind­ness, nei­ther do we have any shame in it. To the extent that euphemisms are used to convey any other con­cept or image, we deplore such use.

National Federation of the Blind Resolution (NFB) 93–01, Dallas, 1993

The NFB had made an impor­tant point: it was under­stand­able why people with AIDS did not want to be referred to as “vic­tims.” But it was less under­stand­able why blind people should not be referred to as blind.

In this kind of over-extension of person-first language, the underlying ableism of our society became clear: to most people, labeling someone with any kind of medical problem or disability is labeling them a victim.

Since person-first lan­guage is unusual in English and can result in awk­ward sen­tences, many argued that it draws atten­tion to itself and “others” the people to whom it refers.

The awk­ward­ness of the pre­ferred lan­guage focuses on the dis­ability in a new and poten­tially neg­a­tive way. In common usage pos­i­tive pro­nouns usu­ally pre­cede nouns. We do not say, “people who are beau­tiful,” “people who are hand­some,” “people who are intel­li­gent,” etc. Under the guise of the pre­ferred lan­guage cru­sade, we have focused on dis­ability in an ungainly new way but have done nothing to edu­cate anyone or change any­one’s atti­tudes.

C. Edwin Vaughan, 1997

Despite protests like these, person-first lan­guage is still con­sid­ered stan­dard dis­ability eti­quette. It is used widely by char­i­table orga­ni­za­tions, edu­ca­tional mate­rials, and it is taught in schools.

But more and more people are begin­ning to rebel against the under­lying assump­tion that med­ical descrip­tors are inher­ently neg­a­tive and insulting.

With the rise of the internet, autistic people were able to unite– sep­a­rately and in their own homes. This has led to the devel­op­ment of an online autistic cul­ture and they, like the Deaf and the Blind, began to rebel at being called “people with autism.”

Person-First Language is about putting as much dis­tance as pos­sible between the person and “the autism.” It is the oppo­site of accep­tance.

Amy Sequenzia, Non-Speaking Autism Activist

As autistic people shared the joys of happy flap­ping, good stims, and same­foods, they began to realize that their autism was a part of them– that is insep­a­rable from how they saw and inter­acted with the world and that this dif­fer­ence wasn’t inher­ently bad.

Autistic people ques­tion cul­tural norms by nature– we often view society and its ways as out­siders. And when you start to ques­tion person-first lan­guage, the argu­ments for it just don’t hold up.

One web­site explains the impor­tance of Person-First Language this way:

In reflecting on the impor­tance of person-first lan­guage, think for a minute how you would feel to be defined by your per­ceived “neg­a­tive” char­ac­ter­is­tics.

For instance, being referred to as the heavy boy, the acne stu­dent, or the bald lady. To be known only by what society per­ceives as neg­a­tive char­ac­ter­is­tics or “prob­lems” would com­pletely dis­re­gard all of the pos­i­tive char­ac­ter­is­tics that make you as an indi­vidual who you are (Snow, 2009). Individuals with dis­abil­i­ties are more than their diag­nosis. They are people first.

The boy next door who has autism is more than an autistic boy, he is a brother, a son and a friend who hap­pens to have autism.

https://nspt4kids.com/parenting/importance-person-first-language/

First of all, there’s a dif­fer­ence between being known as “the bald lady” and someone saying, “I am bald.”

Second of all, calling her “the lady with bald­ness” isn’t any better.  You’re still “defining” her by her bald­ness, whether or not you put the word “lady” first.

You could call her “the lady with alopecia” of course, but what if you don’t know why she is bald? Maybe she shaved her head because she’s rad like that. Maybe she’s proud of being bald. Maybe she calls her­self “The Bald Lady.”

Maybe you shouldn’t assume a lady is ashamed of being bald and would be offended by being iden­ti­fied that way. Maybe you should stop thinking that it is bad or shameful to be bald, or that there’s any­thing wrong with men­tioning it.

That brings us to the third and most insulting thing about the advice quoted above– it assumes that autism is a neg­a­tive char­ac­ter­istic.

Autism comes with a lot of char­ac­ter­is­tics. It colours the way we see the world, how we live our day-to-day lives, what moti­vates us, and what chal­lenges us.

Yes, it is often a dis­ability.  But “dis­ability” is not a syn­onym of “misery.”  We can have a dis­ability and be happy.  We can have a dis­ability and still enjoy the pos­i­tive aspects of autism, such as the joy of a good stim or indulging in a spe­cial interest.

And there is nothing wrong with being autistic. Just like being deaf, or blind, it is a fact of life and not some­thing to be ashamed of.  So many autistic people reject person-first lan­guage because we don’t think autism is a neg­a­tive char­ac­ter­istic.

At its best it can be con­sid­ered a pos­i­tive descriptor, like artistic or majestic. At worst, “autistic” should be a neu­tral neu­rood­e­scriptor. It isn’t an insult.

If you tell a coworker that you are sick today, do they scold you and remind you that your cold doesn’t define you, that you are a person first, and that you are a “person with a sick­ness”?

Of course not.

And hon­estly “person with a sick­ness” doesn’t sound any better than “sick person.”

“Autistic” doesn’t define us, but it does describe us.  It is an adjec­tive, after all. An adjec­tive which describes a diag­nos­able con­di­tion.  Not an insult.  Not a slur.  Just a word which describes a quality.

That being said, some people do feel that their dis­ability is neg­a­tive, and they do prefer the awk­ward arms-length phrasing of person-first lan­guage. That’s totally okay for those indi­vid­uals.

For many con­di­tions, person-first lan­guage is pre­ferred. Person-first lan­guage is a useful way of sep­a­rating a person from a con­di­tion that they con­sider unfor­tu­nate or neg­a­tive.  Many diag­noses are not fun­da­mental to a per­son’s core self and iden­tity.  Unlike autism, a peanut allergy or ingrown toe­nail are not for­ma­tive con­di­tions which shape per­cep­tions and traits.

But by that token, when you use person-first lan­guage to refer to someone else, you are marking their ill­ness or dis­ability as neg­a­tive. And when you do that, you step into dan­gerous ter­ri­tory.  Some people resent the sug­ges­tion that the word for their dis­ability is so dis­tasteful that they should hold it at arm’s length, like it’s a dead fish.

Since person-first lan­guage is so unlike rou­tine English phrasing, it prac­ti­cally jumps out and waves its arms saying, “Hey, I’m trying to be dis­creet about your med­ical problem by using a very notice­able and dis­tinc­tive phrasing which is rarely used out­side of ill­ness and dis­ability!”

Ironically, by using person-first lan­guage, which was devel­oped to avoid labeling people as vic­tims, you can acci­den­tally label that person a victim.

…Which must be incred­ibly frus­trating to people who simply want to be polite and not insult anyone.

So, what to do?

When in doubt, person-first lan­guage is still a safe bet. Even though it is awk­ward and inher­ently ableist, it is con­sid­ered rou­tine eti­quette by most people.

But there are some clear excep­tions, such as the Deaf com­mu­nity– and, over­whelm­ingly, the autistic com­mu­nity.

And if someone with ANY kind of dis­ability or med­ical problem tells you they would rather be called dis­abled or dia­betic or epileptic rather than be tip­toed around with awk­ward phrasing like “person with dia­betes” or “person with epilepsy,” for heav­en’s sake don’t ARGUE.

As soon as you ARGUE with a dis­abled person about how they refer to their con­di­tion, you put your­self in a posi­tion where you’re trying to con­vince them that their con­di­tion is shameful and they shouldn’t want to label them­selves with it.

Does that seem like a good idea to you?

That’s like telling someone that their hat is ugly and they shouldn’t want to wear it. Except it’s worse because we can’t take our diag­noses off.  We’re stuck with it. So let us talk about our damn hat, will you?

It’s pretty sanc­ti­mo­nious when I’m told that if I use the word “autistic” I am “defining” myself by my autism and not making it clear that I am, in fact, a person, not some sort of blob of autistic jelly. Especially when I click on that per­son’s bio and see them describe them­selves as an “autism mom.”

Shouldn’t they, by their own logic, be a person-with-a-child-with-autism?  Why do they get to claim autism as a part of their iden­tity, but I can’t claim it as a part of mine?

In sum­mary– when you use person-first lan­guage you need to con­sider the type of disability/illness being dis­cussed and what exactly it is you are tip­toeing around. “Person” instead of “victim”– great. “Person with Hansen’s Disease” instead of “Leper” — also great. “Person who can’t hear” instead of “Deaf”– not great idea.

Try to be aware of the cul­ture around that dis­ability, since that will give you clues about how they gen­er­ally like to refer to them­selves. Learning about dis­ability cul­tures is cool.

Keep in mind that the more cul­ture there is around a dis­ability, and the more that dis­ability changes some­one’s fun­da­mental per­cep­tions and inter­ac­tions with the world, the more likely it is that identity-first lan­guage is prob­ably a better bet.

But if that’s too com­pli­cated for you — you could always ASK.

Cue the fol­lowing argu­ments in the com­ments:

“Of course autistic is an insult, why would someone be proud of having such a ter­rible dis­ability?”

“My kids are so much more than their autism!”

“Putting the person first is respectful because people should not be defined by what they can’t do but by what they can!”

6 Comments

  1. A small typo — dis­crete has been used, where I think dis­creet was meant.

    1. Author

      Good catch! I love autistic people.

  2. The “My child is so much more than their autism!” argu­ment has always per­plexed me.

    I can say that I’m short, and no one will ever say “you’re so much more than your height!” I can say I’m fem­i­nine, and no one says “you’re so much more than your fem­i­ninity!” We can fac­tu­ally state that I am a small fem­i­nine person, and under­stand that there are also more adjec­tives that describe me.

    We’ve estab­lished that adjec­tives are meant to describe part of a person, not to encom­pass their whole.

    So why do some people act that way if I say I’m autistic?

    (It is a rhetor­ical ques­tion and you do not have to answer it. I’m pretty sure the answer is “because they think autism is bad.” In which case, I’m not the one being insulting here?)

  3. I am bipolar and an alco­holic and I say so nei­ther of this con­di­tions define me so really I don’t mind the labels. My son is autistic and when he’s old enough to decide and talk for him­self he’ll decide how he want’s to be called and that will be that!


  4. I am a trans­sexual man. Via careful and exhaus­tive research, it appears that I am California’s 8th transman. I tran­si­tioned during the 1980s. I pro­vided per­sonal sup­port for a young man who tran­si­tioned to female then de-transitioned to male. He tran­si­tioned due largely to a ther­a­pist who had no knowl­edge of autism, but was a gender iden­tity spe­cialist. This was the impetus for my deci­sion to become a psy­chol­o­gist so that I can join forces with the one and only other ther­a­pist in the bay area who spe­cial­izes in BOTH autism and gender iden­tity issues—because not everyone needs to tran­si­tion their gender who has autism. I am aghast at how little, if any, knowl­edge the average ther­a­pist has regarding adult man­i­fes­ta­tions of autistic symp­toms and comor­bidi­ties.

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