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!”
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19 Responses
A small typo – discrete has been used, where I think discreet was meant.
Good catch! I love autistic people.
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?)
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!
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.
Of course nobody should tell a person what language should be used when describing said person. And of course autism is not inherently bad (like many conditions and like so-called typical brains, it’s a mixed bag, and perhaps neither good nor bad, but simply a descriptor among many). I question the use of autistic as the way I describe my child because I worry that it creates an inaccurate perception of his abilities. I do not want others to underestimate him or limit his opportunities, so autism, for now, does not take the lead. He’s young. When he’s ready, he can correct me, or not.
“The boy next door who is human is more than a human child, he is a brother, a son and a friend who happens to have humanity.”
After all, if one facet of someone’s identity can be linguistically separated from them, then so can all others. Amirite?
You may well be right.
“…abled people showed more compassion…”
So, not only am I disabled by unfair societal expectations, but I have no abilities whatsoever because I am not ‘an abled person’. Thanks for that. I guess.