Is there a “right” way to talk about illness and disability? The current popular favourite is person-first language. It really got going in the 1990s, with the American Psychological Association leading the charge. Instead of talking about a “disabled person”, person-first language literally puts the person first, as in “person with a disability.” This has become the generally accepted practice, and it’s the standard in journalistic and academic writing.
Not everyone likes it, though. Sometimes, people with a particular condition are all for identity-first language, while their supporters prefer person-first language. Autism is a good example of this split, with autistic people talking about being #actuallyautistic, while parents and service providers tend to favour talking about people with autism.
A war on adjectives
I figure people should be able to call themselves whatever they want, but the hard push for person-first language feels to me like a war on adjectives. Somehow, if I say that I’m mentally ill, that becomes who I am and all I am from now until the end of time. Yet no one would bat an eye if I were to use all kinds of other adjectives to describe myself, such as tall, brown-haired, brown-eyed, female, Caucasian, educated, intelligent, introverted, Canadian, etc. None of those adjectives define me as a whole person, nor is anyone else likely to think that they do, so why is it that as soon as you start talking about illness or disability, the English language stops behaving in its usual manner?
Other adjectives that we don’t use in a person-first manner: beautiful, creative, special, beloved, compassionate, brilliant, wonderful, kind, ambidextrous, bilingual, pregnant, and on and on. Why are we being told to talk one way about things that are positive or neutral, but we should talk about stigmatized characteristics in a different way to make them less stigmatized? Does anyone else see the holes in that?
The English language-mangling really gets going when people compare identity-first language to something “I am cancer,” which is a bit like trying to substitute “I am Canada” for “I am Canadian,” or “I am English speaker” for “I am English-speaking.” In the English language, nouns and adjectives don’t work the same way in a sentence. Even more absurd is when people offer “I am cancerous” as a what-not-to-say. You can’t just change the meaning of words to make them say what you want them to say.
Let’s talk disability
Some people take this kind of thing more seriously than others do, and I decided to write this post after I came across the Language Guidelines for the Psychiatric Rehabilitation Association. They seem to take person-first language, and themselves, extremely seriously.
If one must talk about the type of condition that people have, they prefer the term “psychiatric disability” rather than “mental illness” because “terms focusing on ‘illness,’ ‘disorder,’ and ‘diagnosis’ reflect a medical model rather than a psychosocial rehabilitation perspective.” I find this a bit odd, because I bet if you did a poll, those of us actually living with whatever you want to call it would be choosing mental illness rather than psychiatric disability as our preferred terminology.
The folks at the Psychiatric Rehabilitation Association believe that terms like “the mentally ill” and “chronic” are “dehumanizing or pejorative,” and they consider them to be unacceptable. Really? They add that “serious,” “severe,” or “persistent” are preferable to “chronic,” which apparently implies “hopelessness.” I’ve gotta say, I’m just not seeing it.
On the other side of the coin is the haphazard use of illness adjectives or the co-opting of mental illness terms that really don’t mean what people think they mean, but I think that’s a distinct issue from fussing over what to call someone who actually does have a condition.
Stigma is too stigmatized
Stigma is bad; discrimination, prejudice, bias, or negative stereotype are okay. Really? At least most mental health organizations aren’t jumping on this particular word policing caboose.
“Stigma refers to a mark or token of infamy, disgrace, or reproach. There is nothing inherent in people who have psychiatric disabilities or mental illnesses that deserves to be remotely associated with infamy, disgrace, or reproach; nor is ‘stigma’ inherent in people with diverse sexual orientations, gender identities, ethnicities, cultures, colors, or sizes. Therefore, the word ‘stigma”’ is considered unacceptable, and is not used.”
The concept of stigma in the context of mental illness was first described by sociologist Erving Goffman in the late 1950s, and his work was the foundation of much of the stigma research that’s been done since. The fundamental idea of stigma is that it’s not inherent in whatever characteristic is stigmatized; it’s about who society decides to view as more or less human. It encompasses stereotypes and the prejudiced attitudes and discriminatory actions that result from them. It’s an entirely social phenomenon that represents societal norms rather than being a reflection of the stigmatized characteristic. What these people are arguing against misses the boat entirely on what stigma actually means.
And really, when you’ve got a Manhattan Institute fellow writing In Defense of Stigma, you’ve got to know that telling him he should change “stigma” to “discrimination” completely misses the boat.
Is any of this helpful?
This ended up being less focused on person-first language than I originally thought it would be, but it all falls under the umbrella of talking around things rather than talking directly about them.
It reminds me of Steven Pinker’s euphemism treadmill, where words to describe something essentially mean the same thing, but some are considered new and clean, while others are considered old and tarnished because they’ve picked up the societal prejudice.
If someone thinks that being mentally ill makes me a violent “psycho,” the issue really shouldn’t be that I need to stop talking about having a mental illness or being mentally ill rather than being a person with a mental illness. Using similar words that mean the same thing seems totally unlikely to change any underlying attitudes, and in the end, it’s those attitudes that create problems for those of us living with mental illness.
And finally, if we’re telling people with illnesses/disabilities that they’re supposed to talk about themselves or their experiences, that’s very much targeting the wrong audience when it comes to stigma.
What are your thoughts on person-first language or the idea of stigma being too stigmatizing?
My latest book, A Brief History of Stigma, looks at the nature of stigma, the contexts in which it occurs, and how to challenge it most effectively.
You can find it on Amazon and Google Play.
There’s more on stigma on Mental Health @ Home’s Stop the Stigma page.
I find it difficult to know what to think, being on the autism spectrum. As you mention, lots of people on the spectrum like to call themselves “autistic.” Some explicitly see autism as a positive characteristic that contributes to aspects of themselves and their lives that they value. I am still stuck in feeling negative about my autism. However, I fought hard to have my condition diagnosed so in that sense, I do see it as a key part of my identity. Also saying “I’m autistic” rolls off the time easier than “I have autism.” I’m not really sure that I have a final opinion about this yet.
The other can of worms is “Asperger’s Syndrome,” which is technically what my diagnosis is in the UK (to my surprise), but which reminds me that Hans Asperger was a Nazi collaborator. But I think people respond better to “Asperger’s Syndrome” than “high functioning autism.” I used to like “I’m an Aspie,” until I found out about the Nazi thing.
Huh, poking around on the NHS site it looks like it hasn’t adopted the ICD-11 yet, and Asperger’s was still separate in the ICD-10.
It’s interesting how with autism in particular identity-first language has taken on connotations of the condition being a positive thing. For something more neutral, like diabetic vs. having diabetes, those connotations just aren’t there.
I think the word policing is wrong. I have been corrected for saying I am schizoaffective or disabled but not for saying I am diabetic. I work in mental health and use person-first language because that is expected, but would never correct someone describing themselves.
I don’t like words that no one understands. What is a consumer? I do prefer the terms prejudice or bias or shame to stigma because it is misunderstood.
Great topic. One little thing, I noticed a typo in the next to last paragraph
Thanks for catching that!
It seem so absurd to “correct” someone on how they talk about themselves. Consumer puzzles me too.
At the very basic of levels we are all human. Beyond that, in my opinion, it’s many times just a play in words.
True.
I try my best to say i have bipolar instead of I’m bipolar as i couldn’t say i am cancer. I know it’s Symantec but it’s my tiny way of not stigmatize myself
I think you should be able to call yourself whatever you want.
The change of words doesn’t make me see the person any differently. Whether someone says I’m depressed or I have depression doesn’t make me feel like they’re describing me any differently or being more compassionate.
I feel the same way.
We like people first language because it intends to acknowledge people’s humanity (noun before adjective). So the intent feels warm and fuzzy. When we have to think to say the politically correct people first way, we personally are trying to put humanity first. Does the political correctness have that affect on anyone else? Can’t say. But we like putting humanity in the forefront. We don’t particularly like militancy, though. It can take a positive cause and turn it scary.
We don’t know how we think of our own illnesses. It’s just who we are. Hugs make us feel better but they probably won’t heal us. We wouldn’t like being called a psycho. We’re a person with lived experience, same as other people. Being a human means being complex. Some labels remove the complexity and allow us to judge based on a limited profile.
Being a human is very complex. And any given label is just a single lego piece in a Mt. Everest made of lego. Built by a team of Sasquatches. With a massive herd of yak to haul loads of lego. And whipped cream snow on top. Perhaps I’m getting a little carried away… 😉 ❤️❤️
We liked it! ⛰ ☃️
Lol
They can’t just remove the use of “stigma” in applying to people with mental health condtions. Goffman’s work “Social Stigma” uses the word in reference to prostitues, drug addicts. etc. I use it with reference to homeless people all the time. What is one supposed to do? Change the word only when it refers to one of many social groups it could refer to?
“People with disabilities” is a better way to coneptualize this than “disabled people” for the same reason it’s better to say “people experiencing homelessness” than “homeless people.” I think that’s standard journalistic practice now and it makes sense, though I often forget and just write “disabled people.” It gets hard for me to keep track of all the linguistic changes. But I definitely try to, since I don’t want to be “cancelled.”
It is standard journalistic practice, although “disabled people” and “people with disabilities” mean the same thing, and for positive attributes we use adjectives, like “beautiful people” or “intelligent people.”
Yeah. We wouldn’t make a thing of needing to say “people who are beautiful” or “people who are intelligent” because the adjective is not such as would become pejorated.
I really don’t like the push for the person-first language. I think it’s okay in the media, or when someone wants to talk about that particular part of another person’s identity but doesn’t know which way the person in question prefers. I’ve oftenn noticed that the person-first language is preferred by people who haven’t yet reached the level of acceptance of their condition, so I think it can be a good and safer idea to use person-first language in reference to someone when you don’t know them well. But it’s a totally different kettle of fish when you do know that they don’t like person-first language, or prefer identity-first language over it, and keep saying that they’re a “person with…” or even try to correct them when they talk about themselves. It’s patronising, if not downright jerky, because while putting it one way or the other doesn’t really change anything semantically, it does feel like you’re trying to impose your view of the person on them and tell them who they are because you know better.
Speaking very broadly, I don’t mind person-first language, I can understand on some level why it works better for some people, especially when we’re talking parents or other support people, and it always sounds better than “differently abled”, ew! But I wasn’t really raised with it so it sounds weird. Kind of as if my conditions were just something I voluntarily carried around with myself glued to me but I could have just as well unglued them and left them at home, or glued something else entirely instead. Something like bread with butter. It’s probably because my primary/congenital disability is blindness and… person with blindness…? how does that even sound? 😀 In English it sounds awkward and kind of overwhelming to me, and in Polish that’s barely even translatable in a natural way or potentially bordering on offensive, although some people say literally a person with sight dysfunction which makes more sense. So I wasn’t really raised with it, nobody talked about me this way and I only realised that person-first language is a thing when I was a teen or thereabouts and I couldn’t see any major difference in putting things differently, other than it sounded a lot wordier.
You make a very good point that if you can be Canadian without people implying you’re Canada or that this is a defining factor of your entire personality, you should be able to be mentally ill without people instantly jumping to the conclusion that you’re mental illness. The argument that person-first language makes people see the person as a human first and foremost doesn’t really convince me, because I’m a human either way, and I should think it’s quite obvious. 😀 Would saying “I am a mother” make one less human than saying “I am a person with children?” 😀
I kind of feel for people like professionals and supporters of people with all sorts of conditions who advocate for person-first language, because I feel like it would be very difficult for themselves if they became chronically ill or disabled, if it’s apparently so difficult for them to see past this one identity of a person. And such an experience where you’re drowning under the weight of one facet of your identity so much that you can’t even see you’re human, it must be extremely scary.
I think language is and should be a flexible and free-flowing thing, so, while like I said I prefer identity-first language because it sounds more natural, I don’t restrict myself and if I do feel like person-first language flows better in a specific sentence or context, I’ll use it sometimes, just like I might say that I’m crazy or a freak or nuts in regards to my mental illness or in Polish I sometimes say I’m invisible in regards to my blindness ’cause blind and invisible sound kind of similar and that’s how Sofi used to say when she was little because she was confused which is which. I believe rigidity isn’t healthy here, not for me personally in any case.
I agree that free-flowing language is good, and if there’s a good attitude behind it, the language doesn’t matter. I use “crazy” a fair bit, and I think of it much like the LGBTQ community and how they have reclaimed language that was once considered insulting.
It’s so ridiculous when overzealous advocates try to correct how people talk about themselves. We should be able to use whatever words we want to describe our own experiences.
At work we went through so many names like mental health patient, client, service user and all at great cost because they changed all the advice leaflets, admission leaflets and so on. As for me, I was never happy about the terms schizophrenic patients, depressed patients……………. I preferred patients with schizophrenia.
Patients themselves were quite happy to call each other “nutters”, and “schizos”……….
I think there’s something very powerful about being able to reclaim derogatory language and turn it into something lighter.
“…if I say that I’m mentally ill, that becomes who I am and all I am from now until the end of time.” < That does feel true, doesn’t it? I feel the same way with mental or physical illness, and it’s something I’ve thought of before. I suppose I hadn’t considered the depth of the first person language like this before you post though, so thank you for sharing your thoughts.
I’d second “mental illness” over “psychiatric disability”. Actually, if I were to talk about myself I’d say “mental health issues”, I suppose to take some of the heat out of it. I also don’t think “chronic” is unacceptable; like you say, all you could do is swap it out for synonym from the thesaurus and in another 10 years time that’ll develop the same connotations and they’ll deem that one unacceptable, too.
Also – great use of the word caboose. You don’t hear that enough these days!
I do think that there are instances lately where things are taken a little too far in the name of political correctness and similar, where things over overthought to the point where anything of importance is lost sight of altogether. Great post, Ashley!
Caz xx
PS. I realise I said “first person” rather than “person first” 😂
She is rather brain fogged today!
I’d already made and had to correct the same mistake multiple times already. 😉
I think we need a dedicated chronic illness caboose that’s a fancy spa was talented masseuses and an endless supply of tea. That’s a caboose I’d jump on.
Excellent post …. this comment is written from my personal perspective and how l address myself
……… l adopt this philosophy as you have worded it … I figure people should call themselves whatever they want,
I am an Aspergian, an Aspie that was my formal diagnosis – and that makes me actually autistic, but that’s not all of me. I also happen to have bipolar but it doesn’t define me. i was quite interested to read the nazi collaboration comment above and so l Googled it further – l didn’t know – very interesting.
Mostly l say ‘on the spectrum’ or l am an Aspie anyway – that’s not being derrogative towards anything or anyone or in respect to what l have read. It all comes down to what we are comfortable with ourselves.
The language is neither here nor there for me – you can call me stupid if you want and l can either give myself permission to take offence or not – if l know you as a friend, it matters not, if l don’t know you, then it matters not either because you don’t know me and l don’t give a damn about you. I suppose that is my actual philosophy, l give a damn about people that give a damn about themselves first.
It’s just language, we can make more of it or not … it’s up to us, what we call us , ourselves.
All good points. And it’s the people who matter what actually get to see all or almost all of us; anyone else just get bits and pieces anyway.
100% totally spot on Ashley – it’s the people that matter and then let’s be honest – labels mean nothing with good friends – they are friends as they are 🙂
Exactly.
I don’t know – I guess I don’t take it all too seriously. Sometimes I’ll say, for example, that I’m bipolar. Sometimes I’ll say I have Bipolar Disorder. Even though I have schizoaffective – Bipolar type. That’s just too wordy and no one seems to know what it is anyway.
There’s a lot to be said for simplicity.
I personally don’t prefer person-first language for myself. Of course I know I am more than my conditions but when it has fundamentally disrupted my neurobiology, sending it completely down a different road, I feel like I’m patronising myself and my other selves when I use “I am a person with OSDD-1/DID”. Yes we make up a person but we experience different selves, and I am not more real than my others. We are all “parts” (though I hate that word) of a whole.
I think what matters to me for others is that the person should be able to use whatever words they want to describe their experiences.
Absolutely. Our experiences are unique, so our words should be able to reflect that.
❤
I struggle with wording in my psychological reports for children. Of course, the APA drove the big person first bus, and in college I was required to ride.
Then I get out in the world, and sometimes parents WANT that language, but later the kids don’t; like with Autism.
I ask, should I say a child with severe bilateral hearing loss or a deaf child? If parents are hearing, they prefer the first. If parents are also deaf, the prefer “deaf child” because it is part of their identity.
I think person first is a decent guide for mental health conditions—but not all health conditions. Sometimes you just learn by messing it up and getting corrected…
I agree, person first is probably a good default if you don’t know someone’s language preferences. I find it odd that people with a condition/disability/characteristic prefer one term, wheres others who don’t have it decide that’s too stigmatizing.