…Which all autistic bloggers have to write at some point. I’ve written some thoughts about it on a thread on facebook, and people liked those thoughts, so sod it. I’m blogging them as well. It’s come up quite a bit in the last year or so, with well-meaning people getting confused. It even keeps coming up in the bit of my life when I am not looking at a screen. A time will come in every evil autistic overlord’s life…
Person first = Cantatrice is a person with autism / Cantatrice has autism
Identity first = Cantatrice is autistic
That’s it. Does it make much difference which way you phrase it? Of course not. It’s all a minor difference of… oh wait. I see two hordes approaching. One has ear defenders and glow sticks. The other has signs with blue puzzle pieces on. This is going to turn grim because
And if you spend any time talking to autistic people, or about autistic people, particularly online, you’re going to learn just how important it is to many people very quickly.* It may not be immediately clear why people care quite as much as they do, however, and when you’re in the middle of it it may seem ridiculous. Do people really care that much about the difference of a couple of words?
Yes. Yes they do. And a large majority of autistic people prefer “autistic people.” Although others prefer “people with autism” and that’s valid as well. If someone specifies they prefer the people first version, go with it. If not, the identity first is a safer bet.
So, you may have had some kind of workplace training day with bad coffee and stale sandwiches on paper plates, and an earnest looking trainer explaining to you why it’s better to use people first language when talking about disabilities.
“Raquel is a person with paraplegia, not a paraplegic,” says the trainer. “A person. She’s always a person first. She is not her disability. Her disability does not define her, and that is why you need to put the person first and say person with paraplegia. You need to see the person.”
Everyone nods, wishes that the coffee was drinkable, and counts down the minutes until they can leave the session. You probably absorb that this is best practice and you automatically use people-first language whenever the subject of disability comes up. But you probably also think that it seems… a teeny bit silly? We know Raquel’s a person, you think. Or we would, if she wasn’t invented for the purposes of this training session, which was in turn invented for the sake of a blog post which isn’t even about Raquel.
Raquel and her wheelchair have now been flung into a nexus that leads to an alternative dimension. It’s fine. She’s having a great time over there. Also she’s fictional, so you really don’t need to worry.
So the people-first language is received wisdom, it has been for many years, and it’s being taught all over as the correct way, for all people, and all disabilities. Almost all professionals in the field default to it, and are sure that they’re doing the right thing. These are good people, they want to be supportive, and they’ve been trained in best practice.
The only problem is that nobody fucking asked us first, and much of the time, nobody is asking us now. I might go further and say that much of the time, the entire concept of “best practice” can be used as a shield do avoid having to ask us. This one, slightly silly issue has become a battleground because it’s a microcosm of the wider issue of basically nice neurotypical people deciding what is “best practice” for dealing with autistic peeps. The entire concept of asking us before deciding what is best for us is a recent phenomenon, and the reason why it’s happened at all is down to two developments that have happened within the last couple of decades.
Firstly: The diagnostic goalposts have moved. When I was a kid, people like me were not diagnosed with autism. We were just weird, unhappy, anxious kids, who did ok (or even really, really well) in school. I’m not going to talk about functioning labels, because they’re a very simplistic way of looking at it and they don’t really work. But the kids who got diagnosed back then were more obviously autistic to the eyes of a neurotypical observer. They were more likely to be nonverbal, to lash out physically on a regular basis and to struggle picking up life skills. They were less likely to have a future of living independently.
I was just as autistic 35 years ago as I am today, but in those days I was outside the borders of Diagnosisland. Those borders have been moving since the mid 1990s, and I became a Diagnosisland citizen in 2008, but I didn’t move from where I always was. Incidentally, if you’re one of those people who worries about the “autism epidemic” this is what it is. People like me are now being diagnosed all over the place, as adults and as children. Statistically, we look to be new autistic people who didn’t exist before. We’re not. Vaccinate your damn kids.
Secondly: the internet has totally transformed the lives of a great many disabled people. For autistic peeps it has done wonders. It has enabled us to work to our strengths in communicating. I’m awkward in person and often struggle to make myself understood, but I am one wordy motherfucker when it comes to writing. Writing feels like fun communication, not the mental slog of offline communication.** I know what I’m doing online; I’m inside my house which is predictable and unlikely to present surprise sensory overload, so I’m relaxed. At any given moment I am probably being hassled by at least one cat.
There are some autistic people who do not speak but can communicate in other ways when given the technology to do so, and they chat away with others online, which leads me to…
The internet allowed us to find each other and to compare experiences. People all over the spectrum joined the conversation, gained confidence and looked at the world as a group. And then we began to realise that certain things about autism had been put in place without anyone asking us. There’s been a lot of discussion about Autism Speaks and Defeat Autism Now and Light It Up Blue and the puzzle piece imagery and Applied Behaviour Analysis. If you want to know more about any of these things and why we aren’t keen, you can read about them forever. This is because we’re extremely good at being opinionated on the internet. Exhibit A: me.
So I’m going to move away from those things and talk about person first v identity first. This is the thing that is most likely to get you into trouble. You think you’re having a nice conversation and all of a sudden you say “person with autism” to someone autistic and the sky darkens and the thunder pours out of their head and you have unleashed a plague of snakes and you don’t know what you did.
Some disabilities, conditions and illnesses work well with person-first language. Let me do a comparison here and show why autism is not one of them.
“Kenneth has depression” is better than “Kenneth’s a depressive.” But that’s because the depression really IS separate from Kenneth, and something he’d prefer not to have. If you took the depression away from Kenneth he would be MORE Kenneth; he’d be more able to show you who he is as a person, more able to flourish and enjoy his life.
“Cantatrice has autism” is not the same. You couldn’t take the autism away and make me more Cantatrice. If you somehow removed the autism from my brain you’d be left with someone who is not me. Cantatrice is also a woman. But see how if you say “Cantatrice is a person with femaleness” it makes my gender sound like an affliction? That’s the issue here. Some conditions ARE an affliction: nobody wants depression or cancer or syphilis. Others are more like another category, like gender, which isn’t right or wrong, but just IS. That is how a large majority of us autistic peeps want others to see autism.
Now of course you could say that disabilities don’t define us. That is in fact the point that person-first language is trying to make. But, well… it’s not exactly that I am defined by autism. But autism affects every aspect of my experience of the world. It’s why I write; why I sing; why I sit at home being opinionated and hassled by cats.
It affects the way that I hear music and see art and interact with people. It affects who I want to have as a friend. I can sit for hours with nothing more than my own inner world for entertainment, and that is a gift. It has, I think, given me more empathy towards people who are marginalised for different reasons. I don’t think that you can look at autism separately from the rest of me and make any sense of either.
But if you go for identity-first language, won’t people just remember the disability and forget who you are as an individual? Perhaps. Remember our friend Rachel, just wheeling around in the other dimension? (She’s still having fun.) Think about why we need to call Rachel a person with paraplegia. You know she’s a person, right? A fictional person, but let’s not worry about that. She’s not defined by her disability. And yet, you almost certainly remembered her disability and forgot that her name was Raquel, not Rachel.*** It is inevitable that people will often focus on a disability and you can’t just language that away.
When you say “person with autism” it just sounds as though you have to make yourself remember that we are people. You can let that part go unsaid.
* In fact I personally don’t care all that much. I prefer identity first, but I won’t fight you over it as long as you’re respectful. If you’re reading this and thinking “oh God oh God I used person first language that time is she going to hate me?” then calm yourself, buddo. It’s fine. I am not offended.
** This pub is loud. I cannot make out Kevin’s voice. I should lip read as best I can. No wait. Eye contact. I hate eye contact but I don’t want to look shifty. Is this the right amount of eye contact, or do I look weird? Fuck, I’m not looking at his lips and I don’t know what he just said and it was a question. OK, he’s repeating it. What did I do at the weekend? Jesus. Why do they always ask that, as though they care? Same thing I do every weekend, Kevin: I avoided people like you so that I could recharge for the moment I’d have to deal with you again. No, that would be considered rude. Oh, mostly quiet, Kevin. Trying to save money, you know? He seemed to accept that. Now he’s assuming that I want to know what he did at the weekend, which I don’t. I don’t care, Kevin, and neither does anybody else. He’s talking about redoing his kitchen. Help me. Help meeeeee….
*** If you didn’t, don’t leave a smug comment. I don’t actually care.