People-first Language and how its proponents silence those who are supposed to be “first”

I keep reading about people-first language (or whatever it is called) and… apparently I have an opinion about it, and whoa, I have a blog, so I guess I’ll talk about it or something.

For those of you who aren’t familiar with the concept, people-first language is an attempt to enforce “rules” about how to speak to/about a disabled person. For example, instead of saying “an autistic teenager”, one might say “a teenager with autism”. Instead of “a paraplegic” or “a paralyzed person”, one might say “a person with paraplegia/paralysis”. The idea is to put the person first (hence the name), implying that the person is more important than the disability, and that a person is not defined by their disability.

Now, I understand the idea. It’s a nice idea. But… Isn’t it more important to do that with actions, not words? Speaking in a certain way and trying to force others to do the same isn’t going to miraculously fix society. Somehow, I suspect that all this accomplishes is pissing people off. It sure has pissed me off.

Let me make one thing very clear before continuing. I have autism. Asperger’s syndrome, to be exact. Pretty soon it will all be the same thing though, so… I am high-functioning autistic (whatever that means). Most people don’t even notice it. They notice that I’m different, and often seem put off by my non-standard body language, but my behaviour doesn’t just scream “AUTISM” to most people. I usually don’t get stared at (as far as I know), I don’t generally have meltdowns in public, or make strange sounds (at least audibly). So I suppose that I just want to point out that I do NOT speak for the Autism community as a whole. I want to avoid flames down the road, if anyone reads this and pulls out the whole “well my brother has low-functioning autism and…” No. These are MY opinions, based on MY experience of the world as a person with the disabilities I happen to have.

I recently commented on a YouTube video titled “10 Things Every Child With Autism Wishes You Knew”. I’m sure you can find it yourself, if you like. The video, using amazing comic sans+MS paint+bad photography skills listed… 10 things every child with autism wishes you knew. Except, from the perspective of a mother of a likely LFA child. Not the perspective of an actual autistic person. How could they know what every child with autism wants? Does she know every child with autism? Is she omniscient? I’m not entirely sure. Anyway, the first “point” the video makes is as follows:

1. I am a child with autism.

I am not “autistic.” (picture of baby)

My autism is one aspect of my total character.

It does not define me as a person.

(next slide, black against dark blue, smeary with artifacts, nearly unreadable)

Are you a person with thoughts, feelings, and many talents,

or are you just fat (overweight), myopic (wear glasses), or klutzy (uncoordinated, not good at sports)?

Last I checked, a “child with autism” is an “autistic child”. They literally have the same definition. I refer to myself as autistic and see nothing wrong with it. Who is this woman to tell me that I don’t get to do that? I posted on the video, making the point that the video does not speak for all autistic people as it claims to, and that I do not agree with the content of the video and why. These are responses I received.

First, there was this gem…

the “child” should come before the “autism”…it is a point about indentity, and the importance of being seen as a person first, and, if necessary, identified as having a certain condition second…it may seem like a fine point to the average person, but to a person with autism, I am sure it is very important…that is my interpretation anyway…

I not-so-politely (I was irritated) informed the person that I was pretty sure that my opinion as an autistic person was more valid than their NT idea of what they are “sure” autistic people think. I was then informed of this:

….Sorry I was wrong…you are an asshole with autism….

And in one fell swoop, my opinion became invalid. It didn’t matter what I thought about people-first language and how it impacts people with autism, because I am an asshole. Assholes never have valid opinions.

Then, in response to a mother discussing the fact that her autistic son refers to himself as autistic:

Your son is male just as you are female. He is not just autistic. I agree with the video he is a male that has autism. What the video is saying is this – “Everyone is more than just one description, so your son is a male who is a wonderful person with autism. I have a 7-year-old grandson on the spectrum and he is so much more than one word. I hope you understand what I am trying to say. God Bless!

I’ll admit, this one brought about a rant with cussing. I told this ignorant woman that this guy can, in fact, call himself whatever he fucking wants and it’s really not her place to tell him he can’t. I ended the rant with instructions to get the fuck over herself. This was her response.

You are a very angry hurting person for sure. I never said my opinion was more valid. I was simply trying to explain what the video was saying about a person with autism. I am praying for you.

EXCUSE ME? Because I disagree with you, I am “angry” and “hurting”? That’s ANOTHER excuse not to listen to my opinions! “Oh, she’s angry and hurting, it can’t have anything to do with the way I treat autistic people though! She’s just lashing out because other people don’t understand autism. How sad. I’d better continue to ‘educate’ people about what people with autism want. I’m such a great neurotypical for standing up for these people who have no voice!” Meanwhile, I’m screaming “NO! I’m trying to tell you what I want, why won’t you listen!”

Don’t people realize what they’re doing? They pretend to care about what autistic people think, but then when an actual autistic person tries to participate, they are labelled “asshole”, “angry”, “hurting”, “selfish”, “hates parents”, and other hurtful things, so they don’t have to listen to our ideas and opinions.

It just makes me SICK.

(I should point out that the parts I wrote, that aren’t italicized as quotes, are based on a combinations of a lot of attitudes I have encountered, while the parts that ARE indented as quotes are copied and pasted from the comments page. Just to avoid any misunderstandings.)

I suppose what I’m trying to say is… I do not have anything against the concept of person-first language and I understand what its proponents are trying to do. What I have a problem with is how they try to force it on EVERYONE, saying “this is what autistic people want” because I am autistic, and I honestly don’t want that. I honestly couldn’t care less about that, there are much bigger issues to be addressed. Even if I am the only autistic person who does not care about people-first language (which I know I’m not) the generalization of “this is what all autistic people want” is inaccurate. Just like any other broad generalization like that. I suppose it’s like being a white person, standing up and saying “all people of African descent with dark skin want to be called (black/african american/whatever term)!” Because, no. For one, my fictional person is not black. How do they know what all black people want, if they have never been black? I’m not black and I don’t claim to know what all black people want. In fact, someone may take issue with my calling people ‘black’. And that’s fine. I’m not going to pretend to know what the best term is. Two, regardless of what term the person uses, I can virtually guarantee that if I looked hard enough, I could find a black person who doesn’t care if they are called that or not. Because black people are STILL INDIVIDUAL PEOPLE, not some sort of “hive mind” with all the same opinions. Saying anything about “all black people” or “all autistic people” or any other generalization is going to be untrue about SOMEONE.

Unfortunately, within the autism community, the people making the generalizations are often the people in power. If an autistic person speaks up, and voices their disagreement, they are immediately classified as “not really autistic”, “bitter”, “parent-hater”, or many other things to silence their opinion.


Analysis of my current mood

I’ve been ordered to try again on the whole “writing” thing. So, here goes.

I have a paper to write. It is very late, but the teacher says she will accept it. My mom is bugging me to write it, making me less likely to actually do so. I really WANT to write it, but the more my mom nags me the less inspiration I have.  But if I tell her that, she’ll yell at me. So I’m stuck.

Thanksgiving was… Okay. I saw a lot of my cousins, but it wasn’t as fun as past years. My cousin who I shall refer to as Ginger (due to her hair colour) used to be the reason I loved Thanksgiving. It was the only time of year I got to see her. She’s 2 or 3 years younger than I am, putting us close in emotional age (I have been pretty consistently 2 years behind in most things, from my own observations) and so we got along great. We used to play with little Rudolph the Red-Nosed Reindeer toys, and watch movies, and every year we made a turkey out of vegetables with help from our other cousins, and we would play on the computer. We had a Millsbury account we shared (we were really cool) and when we were REALLY young (before either of us was anywhere close to puberty) we’d take a bath together. Well, over the past few years we started growing apart. When I hit puberty I didn’t change much. We were still friends. When SHE hit puberty, she changed COMPLETELY. She’s a cheerleader and wears tight trendy clothes and acts like an idiot because she thinks it’s “cute”. She has completely rejected me and my nerdy ways. We didn’t say a word to each other this year (although I tried, I asked if she wanted to play a game and she didn’t even respond). So, that was depressing.

Something that has changed recently is now my mom brings her boyfriend to Thanksgiving. He sometimes brings his son. I think I need to come up with a nickname for the son besides Stepbrother, but that will have to do for now. So, I hung out a lot with Stepbrother this year, and we played Settlers of Catan and he played his guitar. He’s cool. But I’m getting tired of spending time with people. I need time alone to recharge if I am to be at all social or productive. I was not given a single opportunity to do so all day, then my mom couldn’t understand why I was so antisocial and unproductive.

Another thing is that my back hurt a lot today. I need to stretch out to make my back comfortable, and I try to when I need it. But today when I was sitting in a comfy chair, I put my feet on the footstool so I could stretch and immediately mom’s boyfriend decided he needed the footstool and moved my feet so he could sit on it. I couldn’t lie on the floor because I’d be in the way. So I just dealt with it.

Now I am at mom’s boyfriend’s house, 3 hours from home. He lives 3 hours from my grandparents’ house. I don’t want to be here. I want to go home.

I feel like I’m going to cry.

Well, then.

Today, after reading blogs all day instead of doing my homework (I had a really bad headache, okay?) I decided that clearly I need a blog.

Now, this is not to say that I’m new to the world of blogging! Oh, no. I’ve had several blogs in the past, they just… Never got updated. Quite sad really. I plan to break that pattern by actually updating this one on a somewhat regular basis.

Really! I am!

Anyhow, a bit about myself. My name is Torako, or at least that’s what you’re going to know me as. There are a lot of people who are important in my life, but I need to think of codenames for them. I suppose I can just call them by their online names for now… I have a girlfriend, Neona or N30na, who is very dear to me but infinitely more 1337 than I could ever aspire to be. I have a sort-of-boyfriend, who I think goes by the names of Firefly09td or Firelife on this series of tubes we refer to as the interwebz. He is good at making videos and until recently had adorable fluffy pink hair. But he cut it off. The other important person in my life who has an online persona is Nrot/Chroniclinux, who may or may not still be considered to be dating me, I think not. We never “officially” broke up though, and given the fluid nature of my relationships (everyone loves everyone else) I’m not sure it really matters.

But about me. I am 18 years old and genderqueer, although when asked I identify myself as female and use female pronouns, so for all/most intents and purposes I am female. I am attending my freshman year of college… I am a Computer Science major and I can code at least to an extent in Visual Basic, C++, and C#. Well, and HTML but I mean, everyone knows HTML. Oh and I’ve played with CSS, and I can read Java, and I used to know a bit of ActionScript, and um… Oh, Neona once helped me write a program in bash, but it was really just “hello world” with more obscenities. Which, of course, we left up on the screen (which happened to be the television) because we’re just classy like that.

I’m getting off the subject here. Me. I’m introducing myself. Yes…

I have been diagnosed with ADD and Scoliosis, although I strongly suspect that I also have Asperger’s Syndrome, Bipolar, Depression, and possibly some form of Fibromyalgia. I also have diagnosed myself (as no doctor could diagnose it really) with BIID, or Body Integrity Identity Disorder. Basically, it means that my brain and my body don’t match up. My body is able-bodied (mostly) but my brain thinks it is paraplegic (although it’s not quite sure what level). My BIID is unusual in that most people know exactly where it is, but I don’t. I think it’s because very few people figure out what’s going on as early as I did. I have known about this since I was 16 years old.

Anyhow, that’s enough about me I think. I have class in 5 hours and should probably try to get some sleep before then. Night night!

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