Fictional speech disorder-- not-so-fictional help wanted

[chordatesrock]

I'm working on something-- in fact, I'm almost done with it-- that partly intersects with my own experience, and partly doesn't. The problem is that I can't just ask someone with the condition I'm writing about for help, because it's partly made up. There are case studies of people who seem to display the same symptoms (two of them), but I'm not about to ask them even if I did know how to track down anonymous people.

However, even though the disability is made up, it rings true because it's very similar to multiple real conditions. (It really seems like it should be real, too. It's so plausible.) Additionally, it's central to this fic, so I can't just gloss over it.

The character doesn't describe his own disability in canon, but his best friend calls him "a mute." During the first game (this is a video game series, as I think most of you know already, since, in true fannish fashion, I've been talking about it constantly), this character never speaks, never signs, never writes and never uses any recognizable form of AAC or, in fact, any language-based communication at all. He clearly reacts to spoken language. He occasionally screams, laughs softly and grunts. He gives one character a thumbs-up. Additionally, one of the most significant pieces of canon can be seen in this video.

[Description: starting where I linked-- almost six minutes in-- this video shows a cutscene from the game. Jak (the character with the speech disorder) and Daxter (the one with orange fur) show up at the home of Samos (the flying one with green skin) after sneaking off somewhere they shouldn't have gone.
Samos: "What in green tarnation do you two want?"
Jak brings one hand up to approximately chest height, then turns it until it's palm up, in what looks very much like a one-handed version of the ASL sign "well..." and appears to be trying to say something.
Daxter (interrupting): "We-- we-- we was-- I-- I was--"
At this point, Samos proceeds to lecture them and the rest of the video is irrelevant to my point.]

This really looks like he was starting to sign something. (To be fair, it also looks like he was starting to say something.) Given that he spends about a decade interacting with only the same eight people, it seems entirely plausible that he would have developed his own home sign, and that all of those eight people would know it.

The second installment of canon begins when he's seventeen, after a two-year timeskip. His friend finds him out of it and barely-conscious and says increasingly worried things, finally culminating in "say something, just this once!" Jak responds to that out loud, by shouting words at him. He then proceeds to talk to people repeatedly, often loudly, always fluently, with a normal-sounding (sometimes slightly hoarse) voice, for the rest of canon, without so much as mentioning the fact that he couldn't talk before.

My fic is set after canon, and has him slowly losing the ability to speak.

The things in this fic that I don't have personal experience with include:
-AAC use (the AAC used in this fic includes home sign, something loosely modeled after Proloquo2go and something similar to a Lightwriter)
-Visible disability, specifically speech disorder
-Being nonspeaking
-Being unable to do something everyone has seen you do before

The fic involves disclosure-- whether by talking about it, or just by visibly using AAC-- to most of the canon cast and some OCs with bit parts. A lot of people, some of whom know Jak very well and some of whom don't, learn about and react to the disability. It also has him talking to a person with a similar disability.

I would like to ask people with personal experience to give opinions about this. I do need a beta for characterization, but I'll ask for that on a fandom-specific community; what I'm asking for here, now, is just to talk it over with people. Is anyone open to that?

Thank you. :)

Comments

[sasha_feather]

Have you read Nisi Shawl's Writing the Other?

I ask because at some point you're never going to be able to have all the same experiences as your characters, or going to be able to find people to ask about those experiences. Which is part of writing, to me: writing (and reading), is something we do in order to imagine what it is like to be someone else. At some point you are just going to have to trust yourself that you are being respectful and giving it a good shot.

[chordatesrock]

No, I haven't read it.

I do agree with that. However, I've voluntarily taken on a story that centers on something very close to what real people experience, and those real people have a lot of trouble with their image already (all of us do), and I have no deadline (so, no reason not to take the time), and I suspect that the people in my fandom most likely to read the fic might take it as What Disabled People Think. Hence, I'm asking for input.

Thank you for the book rec. :)

[kaz]

So although I have a speech disorder, mine is quite different from what you're describing here so I don't think I can help much. That said, something which I think might be helpful:

In my experience, people frequently assume that the way they experience the world and their capabilities holds true for everyone - in particular, that if you have difficulty talking, then a) that comes from a similar place as if *they* had difficulty talking, and b) since they can talk fluently if they focus, the same must be true for you. In particular, in this case, I'd assume that (especially given the inability to do something he could do before) people might think that he is refusing to talk rather than unable to talk. I am thinking, here, of the history of selective mutism and how it used to be called *elective* mutism because people just assumed people with this must be choosing not to talk about certain things instead of losing the ability (disclaimer: I don't have selective mutism and don't know much about this subject, if I am getting this wrong please tell me). I am also thinking of the way I have stumbled across stuttering therapies based on the idea that the person who stutters is getting something from it and wants to stutter deep down, when a five-minute conversation with someone who stutters should tell you it doesn't work that way. (See also: people may very well believe this, either fully consciously or to an extent subconsciously, even if Jak and other people tell them explicitly that this isn't what's happening.)

Also: there is a lot, a lot, a lot of conflation of facility with oral communication and intelligence - visible in how people with speech disorders get treated, but also in e.g. things like the treatment of nonverbal autistic people (quite possibly also d/Deaf people who use sign as a primary form of communication? and other disabled people who rely on alternate methods of communication? but again I really don't know anything about that). There are a great many people out there who will assume on *some* level that difficulty saying something means the person can't have anything interesting to say, or halting speech indicates difficulty putting the thoughts together instead of the words.

I don't know the fandom and as said my speech disorder is different, but I do hope this helps! :)

[chordatesrock]

Thank you.

I do have some characters accuse him of lying. (One character, who spent his entire canon appearance deliberately antagonizing everyone, basically tells Jak he won't let him get away with his dastardly plan to somehow take advantage of someone by pretending not to be able to talk.)

Wait, let me get this straight. Wrong People (tm) think that people stutter because they get something from it. Wrong People (tm) also think PWSs are invariably shy and anxious. What, exactly, do these Wrong People think shy, anxious people get out of having their speech patterns noticed and scrutinized by everyone?

Thank you, especially for that second-to-last paragraph, about people assuming speech reflects intelligence. I keep forgetting that one.