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"Person-with" language [Jun. 28th, 2012|12:52 am]


I have Asperger's Syndrome. At various times I say I am an Aspie, I am autistic, I am on the autism spectrum, I have an autism spectrum disorder or I have Asperger's Syndrome. I generally don't bother to use "person with" language and I don't say that I have autism or that I am a person with autism. I don't insist that other people call themselves "autistic person." If another person wants to call themselves "person with autism" I'm not going to try to stop them.

I've found that a lot of people seem to have a problem with this. I hear from people -- mainly parents of autistic children -- who insist that I absolutely positively HAVE TO say "person with autism." I must never ever ever ever say "autistic." "Autistic" is a bad word. I must always always always focus on the PERSON. "Person first," they say. Yet this is how I refer to myself. Why do they have a problem with how I refer to myself?

Granted, when I write about autism I generally write about "autistic people." That's me. That's the way I write. I figure that if people don't like it, they don't have to read my LJ or my autism blog.

However, I've come across a problem. I belong to an autistic writers' group affiliated with a local university, and we are going to publish an autism journal. It's an academic journal sponsored by the university, and we have a set of guidelines to follow if we submit writing. One of the guidelines is that we use "person first" language. We are supposed to say "persons with autism."

I wrote the project director and informed him that "autistic person" rather than "person with autism" is how I refer to myself and is the terminology I use in my writing to refer to myself and to people like me. I asked him if this would be a problem. He told me we can discuss it at the next meeting, but I have the feeling this may be a problem as he always uses "people with autism" at our meetings.

He said that the disability centre always says that we must use "person first" language. I've seen their guidelines, and to me they're a bit ridiculous. These guidelines insist that it is better to say "person with a visual impairment" rather than saying that someone is blind. They say we should use the term "person with a hearing impairment" rather than saying "deaf."

I want to be published in this journal, but I have serious reservations about it if I have to follow someone else's guidelines about how I refer to myself.

[User Picture]From: gloraelin
2012-06-28 09:21 am (UTC)
I personally would not be okay publishing in a journal where I could not self-identify with what I, well, ID as. As long as it's not a slur [and even then in certain instances] I think "people first" guidelines should just go boom.
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[User Picture]From: atalantapendrag
2012-06-28 10:28 am (UTC)
Oh, but if they don't insist you stubborn autistic writers use the language they think is appropriate, how will everyone know how progressive they are?

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[User Picture]From: piemancer
2012-06-28 03:00 pm (UTC)
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[User Picture]From: ebay313
2012-06-28 12:03 pm (UTC)
I wonder how they would respond if you threw out the idea of doing a full article for the journal on this issue of person first language with autism and self-identifications with non-person first language with autism. I've heard people with autism say that they prefer simply "autistic" to "person with autism" because they feel it is a part of their personality in a way other disabilities are not. Not that everyone feels that way, but perhaps they would be open to tackling the issue in a head on way doing research and putting together an article on the difference in identification and the reasons for it? Which may also open the door then to recognizing in the journal that there are a range of identifications among people.

I hate when people don't realize that person first language or whatever else really doesn't (shouldn't) supersede individual's personal identifications.

Edited at 2012-06-28 12:04 pm (UTC)
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[User Picture]From: rainbow_goddess
2012-06-28 04:00 pm (UTC)
I have indeed written an article on the subject:

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[User Picture]From: sammason
2012-06-28 01:32 pm (UTC)
It sounds to me as though this 'guideline' discriminates against autistic people. Some autistic people may like the guideline, others may adapt to it, but I think that some will decide not to write for this particular autism journal. How ironic is that? Bah.
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[User Picture]From: piemancer
2012-06-28 03:04 pm (UTC)
"Persons with a hearing impairment?" Dude, force me to erase Deaf culture in order to participate in a hearing publication? Talk about a mask of benevolence!
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[User Picture]From: fallconsmate
2012-06-28 03:51 pm (UTC)
so much this. Deaf culture EXISTS and hearing people arent in the same universe as much of it.

i dont have hearing impairment of any kind. TheEngineer is nearly at the point of needing hearing aids from too many years of working in machine shops with no hearing protection. and that isnt even CLOSE to Deaf culture.
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[User Picture]From: shesfearless
2012-06-28 03:45 pm (UTC)
I hate the whole person first thing. If someone with a disability wants to use that language, great, but I've honestly never encountered any type of disabled person who does. Of course we're still people! I have a suspicion that it was the able-bodied/minded/etc. people who came up with the whole terminology because of their discomfort at having to address someone's disability.

What really irks me is how this terminology is dictated to us when we're the ones the label often belongs to. Way to be enlightened.

P.S. Another person here who always refers to myself as autistic or just on the spectrum.
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[User Picture]From: sammason
2012-06-28 03:53 pm (UTC)
I agree.

Except that I do refer to myself as a person with multiple sclerosis or as a multiple sclerosis patient. It seems to feel different to people with different disabilities, for some reason. I tolerate phrases that I do find insulting, such as 'Sam's battle with MS' (eurch!) because I want people to feel calm enough to make the adaptations I need. But in an MS journal I'd expect to be allowed to use the phrases I prefer. I think that if I were autistic, I'd likewise want to make my own choices.
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[User Picture]From: kittenmommy
2012-06-28 05:19 pm (UTC)

I have serious reservations about it if I have to follow someone else's guidelines about how I refer to myself.

I don't blame you. And them telling you how you "should" refer to yourself seems really condescending to me, as if you're not smart enough to work out for yourself what you want to be called.
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[User Picture]From: frightened
2012-06-28 07:50 pm (UTC)
I used to have lengthy arguments with my ex-counsellor about my self-identification as crazy/mentally-ill/whatever. It's one of the many, many reasons he's my EX-counsellor. And I'm thinking, dude, know your place, which is NOT to police my fucking identity.

It's not a term I'd use for someone else, unless I was very, very sure they were OK with it. But it's mine, OK? I've done the time, I've had the years of fear and misery and confusion, I have earned the right to use whatever word I choose about my own life and self.

Edited at 2012-06-28 07:52 pm (UTC)
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[User Picture]From: kittenmommy
2012-06-28 08:03 pm (UTC)

I've gone through this a bit with kittendaddy, who really doesn't like it when I refer to myself as "brain damaged" (which is the literal truth: I have Cerebral Palsy). He'll say, "Don't say that!" and I'll say, "Why not? It's true!".

IDK, it really bothers him. And it annoys me a bit, you know?
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[User Picture]From: katisconfused
2012-06-29 04:02 am (UTC)
The thing i find most obnoxious about that phrasing is it is a total lie. If you could be separated from your disability you would be not the same person, because who someone is as a person includes a sum of their experiences and how it has effected them and being in a marginalized group of people will give you pretty damn different experiences than someone who isn't. Just going from more manageable to severe in my condition (not even able bodied, just able to cope well enough to work/go to school) made a huge fucking difference in who I am. I am a totally different person than I was a year ago. I feel uncomfortable using person first language on anyone of any minority because of how much it feels like erasure of experiences to me.
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[User Picture]From: lilenth
2012-06-29 05:55 pm (UTC)
I think it depends on the person, and to be honest, I've had more issues with able bodied concern prats and a few people with different disabilities who have decided to police my identity and the identity of people like me, based on "everyone must use this term! Not that one!".

It's especially prevalent in gender and GLBTQ politics, so many Cis-gendered GLB and straight people lose their shit when someone polices Gay, Lesbian or Bisexual people that way, then commence doing it to Trans/Genderqueer people or supporting those who do.

It's like any inclusive language, it is up to the minority person to decide their identity, and privileged people/people from other minority groups need to learn that learning a new term for a group they're not part of does not empower them to identity police that group.
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[User Picture]From: coldlikedeath
2012-06-29 08:45 pm (UTC)
This is political correctness... if you really want to publish, maybe try and put your reservations aside cos some people don't refer to themselves like that... matter of taste. However, if you don't want to publish, then don't, but you may encounter some things you don't like during the writing and publishing of these things.

Maybe a compromise or something?
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[User Picture]From: katmoonshaker
2012-07-02 02:12 pm (UTC)
Wait a minute... how can you be "with" a disease?? That's stupid so far as I'm concerned. In our house we consider our bipolar disorder a disease. I and my two children 'have' bipolar disorder. My daughter 'has' anxiety disorder. My son 'has' Asperger's syndrome. Geez Louise!! I also 'have' fibromyalgia/CFS/CMP/chronic migraines. Depending on my mood I just might be inclined to smack someone with a cane should they tell me that I'm a person 'with' fibromyalgia/CFS/CMP/chronic migraines. Or just give them the Teacher Glare and say, "I beg your pardon? Would you mind speaking English?"
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