Sunday 14 July 2019

Resource: key articles on identity-first language

I've been meaning to write this for a while. Following a conversation just now (in a cat group on Facebook, of all places!) I thought it was about time I pulled together a comprehensive list of articles by autistic people about why identity-first language is overwhelmingly favoured by us (and person-first overwhelmingly - and often vehemently - rejected).

DO NOT try to minimise or trivialise this subject. DO NOT say, "There are more important things to discuss", or "This isn't important in the grand scheme of things", or anything like that. It may not matter much to you which language is used, but for many autistic people, it really does matter because of how language works and because of the impact of language. At some point I'll be writing something about the linguistic effect and significance of PFL and IFL (and differences between the two), but that hasn't come into even planning existence yet, so keep an eye out. When I do, I will update this list.

I am aiming to make this as thorough as possible, so it is quite likely that as I come across more articles, research, etc on this subject, I will be updating this list. If there are any you readers know of that I have not included, please do let me know and send them my way!

Note: if the article is from The Mighty, don't link it directly and instead try to find it on an alternative website; if you have to, use DoNotLink. The Mighty partners with Autism $peaks.

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Definitions

Person-first language (PFL): puts the person before the condition, separates the two.

Examples: "has autism", "a person with autism", a person living with autism" (I wrote a scathing comment on THAT one on this blog's Facebook page a few weeks ago, which you can read here: https://www.facebook.com/autisticonwheels/posts/2360697670691438), "a person experiencing autism"), "someone touched by autism". I have fibromyalgia and ME/CFS.

Identity-first language (IFL): incorporates the condition as an inextricable part of the person's identity.

Examples: "is autistic", "is Deaf".

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Articles and content on IFL

Listed alphabetically for ease. Mostly from autistic people, but also a few parents who listen to the autistic community and defer to our preferences.

Amy Sequenzia
Person First Language and Ableism
The Gymnastics of Person First Language

Autistinquisitor
Actually, I Do Let Autism Define Me: Identity-First Language

Autistic and Cheerful
Autism terminology: Identity or person first language
Actually, autism DOES define me

Autistic Zebra
No, I Will Not Call You a "Person with Autism"
Identity First Language 

Beth Wilson
Identity First Language

Cassie Crosman
Why the autistic community prefers identity first language

Chloe Farahar
A rose by any other name would smell…of stigma (or, the psychologically important difference between being a “person with autism” or an Autistic person)

Dawn-Joy Leong
Identity First

Diary of a Mom (*NT parent of an autistic child)
Person First: An Evolution in Thinking (at TPGA)
I do not have neurotypicalism: where person-first language fails
Neurology as identity, not accessory

Emily Ladau
Why Person-First Language doesn't always put the person first

Erin Bulluss and Abby Sesterka
Talking About Autism

Gordon Darroch (Autistic Dad)
On Language

Identity-First Autistic
A Brief History of Identity-First Language

Illusion of Competence
Disability first: autism is not an accessory

Jean Winegardner
'Autistic' or 'Person With Autism'? (at TPGA)

Jeff Gitchel (Turtlemoon)
Autism First (Again)

Jim Sinclair
Why I dislike "person first" language

Julia Bascom
Dear "Autism Parents"

Kassiane A (Radical Neurodivergence Speaking)
I don't have autism. I am autistic.
Remember autistic & person aren't mutually exclusive! Language, again.
Classic Neurodivergence: The Cancer Comparison. AGAIN.

Katherine Last (Autistic on Wheels; me)
30 Days of Autism Acceptance: day 15

Kaylene George (Autistic Mama)
3 Simple Reasons to Use Identity Language For Autistics
Yes I Will Say That My Son is Autistic, and Other Unpopular Autism Opinions

Kieran Rose (The Autistic Advocate)
An Autistic Identity (*VERY long; for specifics, scroll down to the heading titled "How we talk is how we think" in particular)

Lorcan Kenny, Caroline Hattersley et al (*researchers; neurology unknown)
Which terms should be used to describe autism? Perspectives from the UK autism community (*abstract/summary only unless you have institutional or paid access)

Lydia XZ Brown (Autistic Hoya)
The Significance of Semantics: Person-First Language: Why It Matters
Identity and Hypocrisy: A Second Argument Against Person-First Language
"People First - Create an Environment of Respect"
My Dog Isn't Named Autism 

Maxfield Sparrow (Unstrange Mind)
Labels are Valuable Tools

Michelle Swan (Hello Michelle Swan)
The language of identity, or "I am not an autism parent"
Why do you say "autistic" instead of "person with autism"?
Autism does define me

Monique Botha, Jacqueline Hanlon, Gemma Louise Williams
Does Language Matter? Identity-First Versus Person-First Language Use in Autism Research: A Response to Vivanti

Morton Ann Gernsbacher
The use of person-first language in scholarly writing may accentuate stigma

Musings of an Aspie
The Logical Fallacy of Person First Language

Nathan McConnell
https://www.facebook.com/growingupautie/posts/324455222418940

Patrick Dwyer (Autistic Scholar)
Identity-First Language

Phillip Ferrigon
Person-First Language vs. Identity-First Language: An examination of the gains and drawbacks of Disability Language in society

Pia Bradshaw et al
Autistic or with autism: Why the way general practitioners view and talk about autism matters

Reaca Pearl (*NT parent and wife of autistics)
5 Reasons Why I Use Identity-First Language For My Autistic Daughter

Robin Eames
Identity first language: a note on language 

Ryan Boren
Identity First

Speaking of Autism
How Person-First Language can be Dehumanizing 

Wibbly Wobbly, Neuro-UNlogical Stuff
Person First vs. Identity First Language

Yenn Purkis
"It's my 'me'!" Identity, language and autism
Why I say "I am Autistic"

Yo Samdy Sam
Person with autism or autistic person?  My problem with “person-first language” for autism

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Images

Identity First Autistic



Jonathan Raiseborough


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Articles on IFL not specific to autism:

American Psychological Association
APA Style and Grammar Guidelines: Disability

Brittany Wong
It's Perfectly OK To Call A Disabled Person 'Disabled', And Here's Why

Cara Liebowitz
I Am Disabled: On Identity-First Versus People-First Language

CL Lynch
Confused about person-first language?

People With Disability Australia
Identity-first Vs Person-first Language 

Monday 8 July 2019

Asperger's: should it stay or should it go?

Just now a question was posed on a local autism (autistic-run) Facebook page that I follow. The person writing it asked what people thought about the "loss" (ie. removal) of Asperger's as a separate diagnosis.
(Quick note: in the US and other places that use the DSM-V diagnosticians no longer give it because it does not exist as a separate diagnosis in that book, it is all "autism spectrum disorder/condition"; here in the UK and other parts of the world we use the ICD-10, which includes Asperger's and is the criteria with which I was diagnosed, but the ICD-11, when it eventually comes out in January 2022, will follow the DSM-V with no separate Asperger's category.)

The page added the hashtag #keepAspergers.

This is the comment I made:

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My formal diagnosis is Asperger's. Quite frankly, I'm happy to see it go, resigned to the history books.

  1. Asperger's as a separate diagnosis causes confusion - that separation from "autism" makes people think that that means it isn't autism, or isn't "real" autism.
  2. Following on from 1, some people/systems use it to deny supports because it is generally associated with not needing as many supports as those with a diagnosis of "classic autism". People go, "Oh, it's only Asperger's so they'll be fine, they don't need support/accomodations, they're just being difficult" (I've had more or less exactly that said to me, as have a number of my friends with an Asperger's diagnosis).
  3. It's an arbitrary, unnecessary division - the only real difference between an "Asperger's" diagnosis and an "autism" diagnosis is whether the person reached developmental milestones earlier than/in line with the average or whether they reached them later than the average. By the time someone reaches adulthood, does it really matter what age they were when they reached those milestones, if they reach them?
  4. It gets used as a functioning label, an alternative to "high functioning autism" (and functioning labels are divisive, restrictive and extremely harmful, and need to be resigned to the history books).
  5. The "Aspie supremacists" hang onto it in their desperate, misguided effort to feel superior to neurotypicals (often evident in such statements as "the next step in human evolution", etc) and those with a "classic autism" diagnosis who require more support, whom the Aspie supremacists regard as inferior and from whom the supremacists wish to distance themselves. A lot of these people support eugenics and believe that autistics with high support needs should be prevented from existing.
  6. Hans Asperger was an actual Nazi who was actively complicit in eugenics, sending autistics deemed "useless eaters" etc to the death camps. Quite frankly, no way in hell do I want to be associated with that.

These days I simply say "I'm autistic" and it does me perfectly well.

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Since I posted my comment (which is what I have written in this post), the page's post seems to have disappeared. Maybe it's a Facebook glitch or but I suspect they didn't like my response so took the post down (mine was the only comment) because there is no record of me commenting in my Fb activity log (which generally indicates that a post has been removed). Knew I should have taken screenshots...



Maybe I'm being cynical and there are other reasons. We shall see.
I could write an entire essay on the subject (and I'm sure I will at some point!), but this was a quick five-minute effort and I'd like to post it. Short but sweet, and all that.

I'll be blunt - that's a cowardly move if it was because of my comment, and if so,I am deeply unimpressed with their actions. I have also since discovered that this page seems to support functioning labels. NOT a fan.