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

gimp_vent

[rainbow_goddess]
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.
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Comments:
[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)
Winning!
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[User Picture]From: lilenth
2012-06-29 05:46 pm (UTC)
^This, That's the kind of crap I've frequently heard from majority people who try to police the self identity of minority groups.
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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:

http://purpleaspie.wordpress.com/2012/04/18/person-first-language/
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[User Picture]From: muuranker
2012-06-28 08:08 pm (UTC)
I think this could be the basis of an excellent academic article.
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[User Picture]From: rainbow_goddess
2012-06-28 08:11 pm (UTC)
I'm currently editing and updating it. I'm going to share it at the next writers group meeting.
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[User Picture]From: muuranker
2012-06-29 06:46 pm (UTC)
Brilliant!

You might want to check out Richard Sandell, Jocelyn Dodd, and Rosemarie Garland-Thomson (editors). Re-Presenting Disability: Activism and agency in the museum, as there are several papers in this volume which address the issue of labels (it's a book about museums, so they mean both the ''I'm a ...' and 'how dare you call me that' kind of label, and the 'this is a jug made about 1800, in Winchester' printed out next to a pot kind of label.

The papers refer to some current research on labelling (both kinds) which you might find intersting/useful, if you don't already have this academic background.

I would be interested in hearing your reactions to this book. Your university library should definitely have it, or be able to get it for you via inter-library loan.
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[User Picture]From: rainbow_goddess
2012-06-29 06:55 pm (UTC)
I'm not a university student, so I can't actually borrow from the library.
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[User Picture]From: muuranker
2012-06-29 07:09 pm (UTC)
Oh, I see.

The divide between the 'haves' of those in acedmia, and the 'have not's of those of us outside (in terms of access to knowledge) is not a good thing.

Could someone in the group borrow on your behalf?

Or could you explain to whoever says 'you have to play by university rules' that this means you will need access to university resources?
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[User Picture]From: rainbow_goddess
2012-06-29 07:13 pm (UTC)
I've been thinking of getting an alumni membership. I might be able to borrow books with that. I'll see what I can do, because it sounds like an interesting book.
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[User Picture]From: sammason
2012-06-30 06:11 am (UTC)
At the University at which I ended up becoming a student, and later a Visiting Fellow, there was a time when I had no status and therefore no access to the library. A conversation with the Librarian led me to find that I could purchase library access. This was 8 years ago and I'm in Britain. Iirc the fee was £50 for a year's library access.
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[User Picture]From: sammason
2012-06-30 06:06 am (UTC)
It's a good article and I've just signed up to follow your blog. Btw I have a blog on WordPress too. Mine's about science.
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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: rainbow_goddess
2012-06-28 06:30 pm (UTC)
Interestingly, I don't think I've ever heard anyone say "person with deafness." Then again, I don't normally hear anyone say "person with a hearing impairment" either. My mother was severely hard of hearing, and she normally just said she was deaf. My ASL teacher said that in the Deaf community (capital D), the terms were normally "Deaf" and "Hard of hearing." (ASL sign "h-h").
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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: shesfearless
2012-06-28 03:56 pm (UTC)
I totally support and utilize the language preferred by individuals regarding their disabilities, because I understand we all have our own comfortable ways of expressing it.

I hate the whole battle thing too. There's no need to add drama to disabilities, because to us, or at least in my experiences, it's already dramatic.

I definitely think PWD's (more person first language for you, but it's shorter :P) should be able to choose phrases in relation to themselves. It should always be understood that no one referring to themselves as autistic, for example, are trampling on your right to call yourself a person with autism.
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[User Picture]From: sammason
2012-06-28 04:40 pm (UTC)
Me, I'm a crip. A cisgendered queercrip. But those are words which I think 'belong' to those of us who they describe. I don't expect random people to call me a crip any more than I'd call my lovely neighbour a nigger.

Oops, this thread is going off-topic.
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[User Picture]From: tnganon
2012-07-22 02:19 am (UTC)
i realise i'm commenting late, but was there really any need to a) make this comparison or b) post a racist slur without warning and uncensored?
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[User Picture]From: rainbow_goddess
2012-06-28 06:33 pm (UTC)
I usually call myself a person with diabetes. I seldom use the term "diabetic." I volunteered to do some work with the Canadian Diabetes Association, and they told me that while they didn't care what I used to refer to myself in my personal life, any time I was working for them or representing them I was required to use "person with diabetes."

In doing some self-examination I've found that I don't consider diabetes to be as big a part of my identify as Asperger's/autism is. Diabetes is a condition that I have. Autism is who I am.
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[User Picture]From: misheymo
2012-06-29 07:43 pm (UTC)
i say i have ms. no ifs ands or buts about it. but, i can't stand people telling me you'll beat this thing or she's suffering from ms. nope. just living with it. its a bad roommate.
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[User Picture]From: kittenmommy
2012-06-28 08:00 pm (UTC)

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.


I totally agree.

I've not run into this a lot myself, but I can honestly say that if someone heard me say, "I have Cerebral Palsy." and corrected me, "No, you're a person with Cerebral Palsy, because the person should come first!" I'd be really annoyed. And I'd feel that the person was being more condescending than honestly helpful.
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[User Picture]From: ebay313
2012-06-29 01:01 am (UTC)
Preference for or against seems to vary by disability a lot as well as among individuals. Though I was taught that the term originated from people with disabilities themselves.

I personally prefer person with disabilities over disabled person and far above "a disabled" which many people actually use. If person is there somewhere it doesn't irk me as much, but I definitely dislike when there is no person involved and I sound like an object, IMO, not a human being someone is talking about.

(now when I'm talking in the first person about myself I would most often not use the term "person", I would say "I have disabilities". Including person literally is mostly relevant when talking about someone else in the third person. Though I would say "I have disabilities" over "I am disabled" typical. But that is just my personal preference.)
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[User Picture]From: shesfearless
2012-06-29 01:47 am (UTC)
I agree with your points. I think it really depends on the disability in question. There's no good way to say a disabled person without including the word person, because "a disabled" does seem pejorative.

My original comment was all in response to the use of person-first language in regards to autism, because as an autistic it drives me nuts. I think with autism it's an interesting issue because autism is a disability but it also has a huge impact on personality (not that other disabilities don't), so I want it as an adjective for other reasons outside of disability because it does describe me, in my experience.
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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: frightened
2012-06-28 08:10 pm (UTC)
To me, it feels like they are denying the seriousness of the condition. When my counsellor wanted to use words like "problematic" and "issues", I was like, no, losing my keys is problematic. Being late for work is an issue. This illness nearly killed me a bunch of times. That's sort of worse.

And when they get all upset about it, I kind of feel like they're appropriating my distress. I'm not comforting them because they're upset by how I refer to my horrible illness. Too busy dealing with the damn illness, thanks.

(Sorry, Rainbow; this is getting totally OT.)
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[User Picture]From: rainbow_goddess
2012-06-28 08:12 pm (UTC)
I don't have a problem with it going OT. It's an interesting discussion about an important topic.
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[User Picture]From: kittenmommy
2012-06-28 11:46 pm (UTC)

Ugh. That would be annoying too!
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[User Picture]From: misheymo
2012-06-29 07:46 pm (UTC)
lol, i'm brain-damaged too! yep multiple sclerosis is a form of brain damage!
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[User Picture]From: rainbow_goddess
2012-06-29 07:57 pm (UTC)
When my partner had a traumatic brain injury he had to undergo a number of assessments to find out how it had affected him. He was describing to me all the fine-motor-skills tasks he had to do, and I said, "I couldn't do all of those things, and I don't have a brain injury!" (I have dyspraxia or maybe "developmental coordination disorder" -- not sure if they're the same thing -- and my fine motor skills are not the best.)

He looked at me for a moment and then said, "Maybe you do, but it happened before you were born."
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[User Picture]From: kittenmommy
2012-06-29 07:59 pm (UTC)

Aren't we lucky! :p
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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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