Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Hillary, Alyssa. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Hillary, A. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Monday, August 5, 2013

Limited Communication

Trigger Warning: Silencing, presumptions of incompetence

I don't mean "this person isn't able to use that many words because they're not capable of doing so." I mean communication that's limited by way of other words not being available. Maybe they don't exist. That's the idea of Newspeak: make it impossible to say things critical of the Party in the official language, or as close to impossible as they can. "Doublethink is doubleplusungood" is a sentence you could say; "Orthodoxy is doubleplusungood" is a sentence you could say, but shades of meaning in the words doublethink and orthodoxy make it nonsense in the paradigm/world of 1984 and the words for why orthodoxy or doublethink are doubleplusungood don't exist. Doubleplusungood but still orthodoxy runs into the same issue.

Every paradigm has words that really only make sense when looking at the world through that paradigm. Every paradigm has words that imply basic ideas of the paradigm just through their use.

Black people in this country are often called "African-American," even if their family isn't actually from Africa anytime recent. Third, fourth, fifth, sixth-generation American's whose families are from Asia are still called Asian-Americans. European descent? My grandfather was born in Germany and he's just called American. That implies a default of white- that's a white supremacist paradigm being implied by language.

Or disability. Look at studies on autistic people. What do we call the non-autistic controls? "Healthy" peers. "Typical" peers. That's implying one normal, better way for brains to be wired. That's rooted in the pathology paradigm. To talk about Autistic people and about people who aren't autistic without calling one a default and calling the other normal, we need more words. We need words that aren't rooted in the pathology paradigm. That's where the words "allistic" and "neurotypical" come in.

(Some words work in multiple paradigms. Some don't. It varies by word. Some words have multiple uses, some of which work in multiple paradigms and some of which only don't.)

Marginalized people in general run into a lot of issues of people trying to limit the words we have access to. I choose not to swear on this blog: I am an adult who can usually speak and can always type. I can choose to use or not use whatever words I know, and I know a lot of words. Reading a lot has that effect. My choice not to swear on this blog (I'm under the impression that it can affect search results, especially for people who have restrictions on their internet use) is extremely different from choosing not to put curse words in someone else's communication device. It's even more different from removing the curse words from someone's communication device when you find them. That's taking away language that has a purpose because you think we shouldn't be using it. We can decide that ourselves. (Mel Baggs has swears in the communication app sie uses. Proloquo2Go recently added voice-acted swears. Henry Frost knows swears and is apparently willing to use them under some circumstances. Kassiane swears a lot. I swear on my Tumblr.)

And yes, swearing has a purpose. That's not the point of this post, but it does have a purpose.
The parallels between giving disabled people a really limited vocabulary and the language restrictions in Newspeak are what I really want to talk about.

At NCIE, a conference about inclusive education, I saw a couple cases where a student (these were kids, but it happens to adults, too) only had access to an extremely limited vocabulary. One had a board with 9 things on it. Yes, No, Hungry, Bathroom, Help, that kind of thing. It wasn't enough to support participation in class, and his inability to participate in class with it got used as evidence that he didn't need a communication system that would let him participate in class. (Someone did eventually give him better communication stuff, and oh look he can participate in class!) One of the nine things was "mad," and the presenter talking about this kids case said, "... and I think if this were your communication system you would be [mad] too!" Another student, this one a girl, was getting class vocabulary added to her AAC device... or about half of it, anyways. Yeah, trying to participate in an English class with only half the vocabulary words is going to go great /sarcasm.

If you don't have access to the words to say something, you're not going to be able to communicate it to anyone else using language. In education for disabled students, especially ones who use AAC, that makes a catch-22 of people being expected to participate before they are given access to the vocabulary they need in order to participate. For disabled people who find themselves unable to swear because people keep taking the swears out of their AAC devices, it can make setting forceful boundaries harder, preventing rebellion against the idea of disabled people not being allowed boundaries. In the world of 1984, it means making rebellion impossible by making the language to explain it nonexistent. They narrow the field of possible communication by removing words in 1984, and they do it to disabled people. They try to do it with lots of marginalized groups, arguing against words like "cis" and "straight" and "white" as descriptors for people, wondering why we have the words "allistic" and "neurotypical" (those two words mean different things,) saying it's divisive to come up with a word for their previously unnamed and unmarked norm. With a subset of disabled people, though, they get to physically remove the word from vocabulary. I don't mean "punish for using." I don't mean "not teach the word." I mean "make impossible to say." Those are three different levels of preventing vocabulary use, and 1984 looks a lot like the one we do to disabled people, given the opportunity. Given what kind of fiction 1984 was (dystopian,) this should scare you.

1 comment:

  1. I think a lot of this has to do with the infantilization of disabled adults. What other population is refused access to the vocabulary of swearing, by ensuring that others don't swear around them? Children. Young children, at that.

    By refusing disabled people access to the language that allows them to firmly set boundaries and even *gasp* choose to be rude, speaking carers, app designers, and other professionals place disabled adults in the same social stratum as babies and toddlers.

    You've already addressed one of the catch-22s inherent to this, but I just thought of another: They're denied the communication abilities to prove their competence and then that is used as an excuse to assume them incompetent.

    My parents used to do that with me regarding boundaries: "She doesn't mind!" when every time I tried to speak up to say that um, actually, I did mind, I would be punished so severely that the thought of asserting a boundary made me so nervous I couldn't speak past my stutter. They set up the situation such that I couldn't assert a boundary, and that was used as an excuse to pretend that the boundary didn't exist.

    ... and then, because I never asserted boundaries (because I couldn't get the words out past my stutter because they always blew up at me for it whenever I'd tried and as such I was too nervous to be able to talk), that was used as an excuse to never let me do anything alone (i.e., develop independence) because "You have no boundaries and someone might take advantage."

    It was also used to try to coerce me into following a curfew and asking my mother for permission to do anything when I went to uni and was in fact living in a different province. I was able to put a stop to that simply by keeping my mother out of the loop of everything. Shock and amazement, nobody ever "took advantage" of my supposed lack of boundaries because the friends I made were the sort to explicitly ask before doing something that might cross a boundary, rather than assume I had no boundaries and then punish me and ignore my boundaries when I tried to assert them.

    Thing is, it was never that I have no boundaries. It was that I was incapable with my current communication abilities and life situation of asserting my boundaries, and my relatives had a vested interest in making sure it stayed that way. There is a huge difference there.


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