People First Language
One of the biggest challenges I’ve had in the 10 years I’ve been writing on the subject of mental illness is the evolving use of language around disabilities. Sometimes I’ve been relieved by change; other times I’ve been frustrated. I recently had the opportunity to start thinking about this again because I accidentally let a writer use the phrase “wheelchair-bound” in an article I edited. Afterward, the subject of the article objected, and I felt terrible. I wasn’t hip to that particular change, but in the future I won’t use it again.
Often, the lack of a consensus stymies writers and members of the media. In my case, I’m sort of okay if you call me “bipolar,” but there are many other people who think that’s terrible — and that you should only say “person with bipolar disorder” or “person who has been diagnosed with bipolar disorder.” As a writer concerned with rhythm and clarity, I have to object to the latter for myself. Yes, I’ve been diagnosed that way, but given that I concur with the diagnosis, I’m comfortable saying “I have bipolar disorder.” A lot of people object to “a person who suffers from bipolar disorder,” but I remember just a couple years ago when that was absolutely the most appropriate language.
One thing I feel we’ve mostly agreed upon: To call a person schizophrenic is really out of date. As in: “I think he’s schizophrenic.” In clinical contexts that emphasize recovery, people definitely say, “I think he has schizophrenia,” if not something more progressive, like the examples above. There’s something historically uncomfortable about the word “schizophrenic” that hasn’t yet accrued to “bipolar,” if only because the illness (oops) only recently shifted from “manic-depression.”
And now to that oops — some people no longer like to say “mental illness.” Some prefer “brain disorders” but others like to go in the opposite direction and say, well, I’m not even sure anymore. Because I subscribe to some of the horrors that many people rail against (like that my symptoms are part of an illness; that medication can work; that not all of the DSM-IV isn’t balderdash), my language may, at times, be less People First-ian than that of others.
For example, I wear two hearing aids and have been, for some years … hearing-impaired? Suffering from hearing loss … ? Partially deaf .. ? (I am not, however, Deaf. That I know for sure.) My friend and I talk about this sometimes because she is partially deaf (with much more impairment than I have) and has been so since childhood. But even she doesn’t know what the hell to call it. If she meets someone who’s like a bit more deaf than she is (but not Deaf), she doesn’t know what to say to contextualize herself. It’s so weird.
Maybe because I was a translation scholar, I love this kind of discussion. I’d be interested to hear (but talk loud! Heh.) what you all think of People First language, in all its permutations.
[Button (that I should really get for public situations) available here.]
liz | 2:55 PM | DISABILITY, SCHIZOPHRENIA, bipolar disorder, stigma
I struggle with this, too. I may lean a little too far in favor of hard, concrete language to describe both my bipolar disorder & hearing problems: mad, crazy, half-deaf (I’m completely deaf in one ear).
But I really do prefer language that gives a concrete description of my experiences over language that sounds rather jargony to me. I’d rather say I’m manic-depressive than bipolar, though I usually don’t; bipolar does roll off the tounge a bit faster. “Manic” alone is a different story: It always strikes me as similar to “schizophrenic,” used as shorthand for “abnormal.”
But maybe I’m too self-depricating about all this, leaving people with the (occasional) impression that I see myself through my own stigmas. Then again, manic-depression isn’t exactly a pleasant problem, so softening it too much makes it feel like I’m failing to say what I mean.
As for the deaf ear (which dates at least from early infancy, meaning I’ve had no experience with stereo hearing & no problem adapting to one good ear), at least the harder language lets me get away with the “what?” gag constantly.
I don’t know what current recovery terminology is in the states, but in Canada there’s a big push for mental health “consumers” not “clients”. I mean, I totally get it, we/they are not patients. However, I was most definitely my therapist’s client. I was not consuming a service, I hate the word consumer, it makes me think of our consumeristic society. And so, I have clients, until one of them tells me differently or I become convinced that I want people to consume my services…. can you consume counselling?
p.s. I HAVE an Anxiety Disorder.
I absolutely HATE being called a “consumer”…ugh! You wouldn’t call someone a “cancer consumer” would you?!? For a while I was stuck on saying I am “a person who has a mental illness” or “a person living with schizophrenia”, but pardon my language: fuck it! I’m schizophrenic! I’m crazy! I can talk about myself however I want to! I do usually say that “I have schizophrenia,” but it still seems just as weird to think about how absurd it is to have this illness no matter how I’m saying it. When other people are talking about it it usually depends on if they are being jerks or not, not if they are using proper language. But seriously, all the talk about “consumers” and even “clients” makes me want to barf!
I’m always amazed and appalled at the way people stumble around to accommodate those too thin-skinned among us to deal with the language surrounding disabilities. I have heard the phrase “differently abled” spoken aloud a few times and rolled my eyes to the point of cramping. Most of us are “disabled” to one extent or another, and we all become disabled to some degree as we age. Let’s all just get on with the show and react to people for their intentions, not their words.
Long past the Era of Psychosocial Rehabilitation, post the Era of Evidence Based Practices and now into the Era of Wellness & Recovery, where I was once a patient, then a recipient, then a client, I am now a consumer but the only thing that changed was my medication. (Anonymous)
Progressive systems evidence change through deeds and achievements; lesser one merely change the names.
I’m both a person with bipolar disorder (which I prefer to “a bipolar”) and a historian of disability issues. From a historical perspective, the people-first movement is certainly an encouraging development, in my opinion. Terms like “differently abled” are passe, and considered by most disability studies folks as being condescending. (”special” is also problematic) There certainly isn’t a consensus though.
What’s in a name? A rose is a rose, etc. Language is always changing, often just when you grasp what the words mean, sometimes as an attempt to protect us from hurtful associations and unfair connotations or unnacceptable truths. It’s the stigma we impose on ourselves, the “thin-skinned” as Tom said, that make our ears, no matter how unimpaired our hearing may be, sensitive to words.
Eh, I’ve been having this discussion for years because I have a physical disability (am disabled, whatever) and now that I have a bipolar diagnosis (am bipolar, whatever) it’s surfacing again.
I really don’t care if people call me bipolar but as for myself, I say “I have a bipolar diagnosis” because I do not agree with that diagnosis. I also refer to my mentally ill friends (and myself) as “crazy” in a good-natured way, although once, a nurse in a mental hospital I was visiting said I’d come to see all the crazy people, and that was so NOT okay. I do not believe in calling these things “brain disorders” as they have not been proven to the extent of something like Parkinson’s, Alzheimer’s, or Hungtington’s diseases, the organic brain disorders.
The whole debate goes on and on without resolution. I’ve been a participant for 10 years (though only “bipolar” for 1 and a half), but next time, the preferred term is “wheelchair user”– and people don’t like to be called “sufferers” anymore.
A couple of thoughts, the first about the semantics of mental illness and the second about People First legislation.
The language of mental health is something I hope to give some serious thought to one of these days. I myself have started to use “individuals,” “people,” “those,” etc., “with a mental health diagnosis” instead of the “mentally ill.” It’s not just that the latter is charged with thousand of years of stigma, but “mental illness” has always seemed to separate the brain from the rest of the body (althought “mental health” does the same, but I think to a lesser degree.) Certainly if speaking about a specific diagnosis, I’ll use the name, but try not to lump everyone together.
The words that prick my sensitivities most, however, are those of “consumer” and “caregiver,” although there are many individuals and organizations that don’t seem to mind using “consumer.” “Client” is my preferred word, though it’s far from perfect. There’s probably not language on which a consensus will be reached anytime soon. It’s a stickler. Then again, cancer use to be the “C-Word,” AIDS was only contracted by bleeps and bleeps, I still remember getting jerked away from “Colored Only” drinking fountains, and was raised in a society where the “N” word wouldn’t raise an eyebrow.
North Carolina just passed and sent a People First bill to the governor, the gist of which is: “The Legislative Services Office shall incorporate into its drafting training of legislative drafters the 8 preference to avoid language that implies a person as a whole is disabled, equates a person with his or her condition, or is regarded as derogatory or demeaning.” The Arc of NC was a principal supporter. I’m sure it’s a fine organization and has been “The Arc” now instead of “ARC” for 15 years. But it seems that stepping far, far away from the derogatory genesis of its name would have better and made more of a statement. I’m sure they would argue that losing the name recognition would have hurt their advocacy efforts, but to me it would have made a statement that they were doing it for the right reasons.
Sorry for the novel. Sometimes I get going …
Lots of interesting comments on this. I also really hate the word consumer. Just posted on my blog regarding this, especially regarding constructions such as shortening social worker to “worker,” or discussing a “hospitalization.” I think the first invokes stigma and the second is just unfortunate English.
The post is here.
How pathetic are these blog comments? Very. I usually refer to myself as ‘person labeled by psychiatry against his will with no biological test whatsoever based on the current paradigm of medicalization of human distress which is currently infesting our society with the aid of big pharma’s billions.
And if that’s too long for you, than fuck you, you’re the one who voted for the government who forced this label down my throat.
Reply: