Hi. This Isn’t About Writing Necessarily, But I Still Want To See What You Think Of It. :( I Just Recently

sonic sez

on tumblr lot more people know about it which great! that improve life of all AAC users. but pretty much with anything disability/developmental disability space on social media (which need certain amount of cognitive/intellectual & language abilities be on even if have support), good majority you see be teen & adult people who already literate learn language via speech n write *first* n then *independently* learn AAC base on it *later*.

especially symbol based AAC, but all AAC, is new system n hard n take long time learn even when you literate & not moderately severely cognitively disabled. but also, “literate teen/adult independent learn AAC” not at all full face of AAC user community.

as in like. experience of theirs. not universal. independently motivated & able to look up different AAC options different AAC apps, compare n contrast. download app n immediately know how to use, or able figure out by self. first time use app n may be clunky n slow, but make sentence on first try. need learn AAC, but most of that learning is for where words are (if button based), how exist as AAC user in public with confidence, etc. those all valid but not true for everyone who need AAC, especially not developmentally disabled children (& some adults) with complex communication needs.

most developmentally disabled children (n some adults) w complex communication needs who need AAC, can’t just hand them tablet with symbol based AAC app or text to speech AAC app n then wait for magic. many of them developmentally delayed in way, not taught in way that fit them (e.g. gestalt language processors), n their language abilities behind peers, so they can’t read, can’t spell, can’t grammar, etc.

some of them need learn where word is not by read word, sometimes not even by understand symbol, by other people press button n hear sound n associate that with meaning n location on AAC n symbol associate with it. in other words, they learning language alongside AAC.

for some their learn process look like, learn how use AAC say one word. n then much later, try make two word message, “want food” “go school.” “two word message” incredibly common goal for many these developmentally disabled children, teens, n even adults, that is something rare n truly extraordinary for that person that need be celebrated.

for others it look like learn by phrase (gestalt), then slowly break it down into smaller phrase n chunks n finally single words.

many of them babble (click random/seemingly random buttons on high tech device, stim with it, etc). but ultimately, won’t be able learn all by self. need be taught, see you accidentally spill water n crying, maybe you “feel” “sad”, n when that happen you “need” “help” from adult. need learn AAC by adults around them constantly model with it, constantly use it in conversation, show them how use. because they learning language along side it.

but also some of them don’t know what this thing in front of them (AAC… device, low tech boards or picture cards, etc) is. don’t know what communication is or you should do that. don’t know people exist who you should communicate to & with. heard many parents n SLP say they try model all time, try all kind of stuff, but child just not seem interested in it, don’t look at it, don’t touch it, don’t use it.

people who use AAC, not all them struggle with only speech. some them struggle with language, with intellectual/cognitive. some of them very developmentally delayed.

n some people, too disabled learn or use AAC. yeah, they exist.

for people who cannot use / cannot only use speech to be understood, AAC can be life changing. but is so much more complex thing. AAC still not as widely used n accepted n properly taught n supported as should, some parents n professionals n schools still many pushback n refuse. but sometimes answer to “have you tried AAC for them” is “yes, but they need long time n lots help to learn n we not very far yet even though spent long time on it” or “yes, but they simply not show interest even after constant model” or “god, wish can, but insurance only cover if show some amount of communication competence n ability use AAC, while only give 1 month trial, which simply not enough time” (wide spread thing that happen) or “yes. many types. it not work.”

for many AAC users & AAC user-to-be, it not as simple as “be handed AAC n check back in while they figure out by self”

Yesterday the 12th of May was Fibromyalgia awareness day. I'm a little late uploading it, but spreading awareness is being done nonetheless. Lots of love for my chronic pain people!! <3

being a kleptomaniac and having morality ocd is a special circle of hell <3

imagine if disabled people could scroll through our own goddamn tags without being bombarded with OCs and medfet. imagine.

I would probably have way less diagnoses if the doctors had explained to my parents and properly documented things when I was a baby.

Like, I have some unspecified hip condition, I was born with it. That's all my mom knows. I figure it's bilateral, and that might be why my gait is weird and gods know how many of the other problems I have with my legs, like how one's longer than the other. The TBI I got as a baby was, according to my mom, complicated. All the doctor really bothered with was saying I'd be fine, he didn't tell her a lot of details. Again, gods know how many of my things that could have caused. There was whatever happened when I was five, when a severe allergic reaction (to something I had only been slightly allergic to before and have only been slightly allergic to after) and asthma we hadn't known I had put me in the PICU for days and the hospital for two weeks, then a nebulizer for months and an inhaler for year but never an Epi Pen, which I have questions about now. Apparently I also have something up with my heart.

And we don't have any of this information because the doctors weren't explaining it.

Salt pills are a miracle. I had low salt levels earlier, took one, and it took my levels up so fast it was wild. I went from feeling like I needed a hospital to feeling fine in what seemed like minutes without needing to dump table salt into my mouth. Beautiful. 100% recommend

i think that “people with limited mobility or ability to leave their homes deserve the same access to goods and services via home delivery” and “the exploitation of workers through gig delivery apps is Bad” are two sentiments that can and should exist simultaneously in the brains of like… anyone with the capacity to think lmao

Being disabled has made me notice all of the ways the world is failing in accessibility. I’m fortunate that I can now open doors with my arms/hands, but do you know how many times I look around and there is no wheelchair access button on public doorways? Or how many times the button is broken? Or how there is no place to sit in a store, or the chairs were recently removed when I planned on using them to rest? Not to mention the uneven sidewalks, or aisles that are too narrow, or whatever else? People really do forget disabled people exist.

The Mask Trope, and Disfiguremisia in Media

[large text: The Mask Trope, and Disfiguremisia in Media]

If you followed this blog for more than like a week, you're probably familiar with “the mask trope” or at least with me complaining about it over and over in perpetuity. But why is it bad and why can't this dude shut up about it?

Let's start with who this trope applies to: characters with facial differences. There is some overlap with blind characters as well; think of the blindfold that is forced on a blind character for no reason. Here is a great explanation of it in this context by blindbeta. It's an excellent post in general, even if your character isn't blind or low vision you should read at least the last few paragraphs.

Here's a good ol’ tired link to what a facial difference is, but to put it simply:

If you have a character, who is a burn survivor or has scars, who wears a mask, this is exactly this trope.

The concept applies to other facial differences as well, but scars and burns are 99% of the representation and “representation” we get, so I'll be using these somewhat interchangeably here.

The mask can be exactly what you think, but it refers to any facial covering that doesn't have a medical purpose. So for example, a CPAP mask doesn't count for this trope, but a Magic Porcelain Mask absolutely does. Bandages do as well. If it covers the part of the face that is “different”, it can be a mask in the context used here.

Eye patches are on thin ice because while they do serve a medical purpose in real life, in 99.9% of media they are used for the same purpose as a mask. It's purely aesthetic.

With that out of the way, let's get into why this trope sucks and find its roots. Because every trope is just a symptom of something, really.

Roughly in order of the least to most important reasons...

Why It Sucks 

[large text: Why It Sucks]

It's overdone. As in — boring. You made your character visibly different, and now they're no longer that. What is the point? Just don't give them the damn scar if you're going to hide it. 

Zero connection with reality. No one does this. I don't even know how to elaborate on this. This doesn't represent anyone because no one does this.

Disability erasure. For the majority of characters with facial differences, their scars or burns somehow don't disable them physically, so the only thing left is the visible part… aaand the mask takes care of it too. Again, what's the point? If you want to make your disabled character abled, then just have them be abled. What is the point of "curing" them other than to make it completely pointless?

Making your readers with facial differences feel straight up bad. I'm gonna be honest: this hurts to see when it's all you get, over and over. Imagine there's this thing that everyone bullied you about, everyone still stares at, that is with you 24/7. Imagine you wanted to see something where people like you aren't treated like a freakshow. Somewhat unrealistic, but imagine that. That kind of world would only exist in fiction, right? So let's look into fiction- oh, none of the positive (or at least not "child-murderer evil") characters look like me. I mean they do, but they don't. They're forced to hide the one thing that connects us. I don't want to hide myself. I don't want to be told over and over that this is what people like me should do. That this is what other people expect so much that it's basically the default way a person with a facial difference can exist. I don't want this.

Perpetuating disfiguremisia. 

"Quick" Disfiguremisia Talk

[large text: "Quick" Disfiguremisia Talk]

It's quick when compared to my average facial difference discussion post, bear with me please.

Disfiguremisia; portmanteau of disfigure from “disfigurement” and -misia, Greek for hatred. 

Also known as discrimination of those mythical horrifically deformed people.

It shows up in fiction all the time; in-universe and in-narrative. Mask trope is one of the most common* representations of it, and it's also a trope that is gaining traction more and more, both in visual art and writing. This is a trope I particularly hate, because it's a blatant symptom of disfiguremisia. It's not hidden and it doesn't try to be. It's a painful remainder that I do not want nor need.

*most common is easily “evil disfigured villain”, just look at any horror media. But that's for another post, if ever.

When you put your character in a mask, it sends a clear message: in your story, facial differences aren't welcome. The world is hostile. Other characters are hostile. The author is, quite possibly, hostile. Maybe consciously, but almost always not, they just don't think that disfiguremisia means anything because it's the default setting. No one wants to see you because your face makes you gross and unsightly. If you have a burn; good luck, but we think you're too ugly to have a face. Have a scar? Too bad, now you don't. Get hidden.

Everything here is a decision that was made by the author. You are the one who makes the world. You are the person who decides if being disabled is acceptable or not there. The story doesn't have a mind of its own, you chose to make it disfiguremisic. It doesn't have to be.

Questions to Ask Yourself

[large text: Questions to Ask Yourself]

Since I started talking about facial differences on this blog, I have noticed a very specific trend in how facial differences are treated when compared to other disabilities. A lot of writers and artists are interested in worldbuilding where accessibility is considered, where disabled people are accepted, where neurodivergence is seen as an important part of the human experience, not something “other”. This is amazing, genuinely.

Yet, absolutely no one seems to be interested in a world that is anything but cruel to facial differences. There's no escapist fantasies for us. You see this over and over, at some point it feels like the same story with different names attached.

The only way a character with a facial difference can exist is to hide it. Otherwise, they are shamed by society. Seen as something gross. I noticed that it really doesn't matter who the character is, facial difference is this great equalizer. Both ancient deities and talking forest cats get treated as the same brand of disgusting thing as long as they're scarred, as long as they had something explode in their face, as long as they've been cursed. They can be accomplished, they can be a badass, they can be the leader of the world, they can kill a dragon, but they cannot, under any circumstances, be allowed to peacefully exist with a facial difference. They have to hide it in the literal sense, or be made to feel that they should. Constantly ashamed, embarrassed that they dare to have a face.

Question one to ask yourself: why is disfiguremisia a part of your story?

I'm part of a few minority groups. I'm an immigrant, I'm disabled, I'm queer. I get enough shit in real life for this so I like to take a break once in a while. I love stories where transphobia isn't a thing. Where xenophobia doesn't come up. But my whole life, I can't seem to find stories that don't spew out disfiguremisia in one way or the other at the first possible opportunity.

Why is disfiguremisia a default part of your worldbuilding? Why can't it be left out? Why in societies with scarred saviors and warriors is there such intense disgust for them? Why can't anyone even just question why this is the state of the world?

Why is disfiguremisia normal in your story?

Question two: do you know enough about disfiguremisia to write about it?

Ask yourself, really. Do you? Writers sometimes ask if or how to portray ableism when they themselves aren't disabled, but no one bothers to wonder if maybe they aren't knowledgeable enough to make half their story about their POV character experiencing disfiguremisia. How much do you know, and from where? Have you read Mikaela Moody or any other advocates’ work around disfiguremisia? Do you understand the way it intersects; with being a trans woman, with being Black? What is your education on this topic?

And for USAmericans... do you know what "Ugly Laws" are, and when they ended?

Question three: what does your story associate with facial difference — and why?

If I had to guess; “shame”, “embarrassment”, “violence”, "disgust", “intimidation”, “trauma”, “guilt”, “evil”, “curse”, “discomfort”, “fear”, or similar would show up, because it's always the same shit.

Why doesn't it associate it with positive concepts? Why not “hope” or “love” or “pride” or “community”? Why not “soft” or “delicate”? Dare I say, “beauty” or “innocence”? Why not “blessing”? “Acceptance”?

Why not “normal”?

Question four: why did you make the character the way they are? 

Have you considered that there are other things than “horrifically burned for some moral failing” or “most traumatic scenario put to paper”? Why is it always “a tough character with a history of violence” and never “a Disfigured princess”? Why not “a loving parent” or “a fashionable girl”, instead of “the most unkind person you ever met” and “total badass who doesn’t care about anything - other than how scary their facial difference is to these poor ableds”? Don’t endlessly associate us with brutality and suffering. We aren’t violent or manipulative or physically strong or brash or bloodthirsty by default. We can be soft, and frail and gentle and kind - and we can still be proud and unashamed.

Question five: why is your character just… fine with all this?

Can’t they make a community with other people with facial differences and do something about this? Demand the right to exist as disabled and not have to hide their literal face? Why are they cool with being dehumanized and treated with such hatred? Especially if they fall into the "not so soft and kind" category that I just talked about, it seems obvious to me that they would be incredibly and loudly pissed off about being discriminated against over and over... Why can't your character, who is a subject of disfiguremisia, realize that maybe it's disfiguremisia that's the problem, and try to fix it?

Question six: why is your character wearing a mask? 

Usually, there's no reason. Most of the time the author hasn't considered that there even should be one, the character just wears a mask because that's what people with facial differences do in their mind. Most writers aren't interested in this kind of research or even considering it as a thing they should do. The community is unimportant to them, it's not like we are real people who read books. They think they understand, because to them it's not complex, it's not nuanced. It's ugly = bad. Why would you need a reason?

For cases where the reason is stated, I promise, I have heard of every single one. To quote, "to spare others from looking at them". I have read, "content warning: he has burn scars under the mask, he absolutely hates taking it off!", emphasis not mine. Because "he hates the way his skin looks", because "they care for their appearance a lot" (facial differences make you ugly, remember?). My favorite: "only has scars and the mask when he's a villain, not as a hero", just to subtly drive the point home. This isn't the extreme end of the spectrum. Now, imagine being a reader with a facial difference. This is your representation, sitting next to Freddy Krueger and Voldemort.

How do you feel?

F.A.Q. [frequently asked questions]

[large text: F.A.Q. [frequently asked questions]]

As in, answers and “answers” to common arguments or concerns. 

“Actually they want to hide their facial difference” - your character doesn’t have free will. You want them to hide it. Again; why.

“They are hiding it to be more inconspicuous!” - I get that there are elves in their world, but there’s no universe where wearing a mask with eye cutouts on the street is less noticeable than having a scar. Facial differences aren’t open wounds sprinkling with blood, in case that's not clear. Also, despite what you clearly think, unless your setting has like twelve people total, there will be multiple people with facial differences in it.

“It’s for other people's comfort” - why are other characters disfiguremisic to this extent? Are they forcing all minorities to stay hidden and out of sight too? That’s a horrible society to exist in.

“They are wearing it for Actual Practical Reason” - cool! I hope that this means you have other characters with facial differences that don’t wear it for any reason.

"It's the character's artistic expression" - I sure hope that there are abled characters with the same kind of expression then.

“They’re ashamed of their face” - and they never have any character development that would make that go away? That's just bad writing. Why are they ashamed in the first place? Why is shame the default stance to have about your own face in your story? I get that you think we should be ashamed and do these ridiculous things, but in real life we just live with it. 

"Now that you say that it is kinda messed up but I'm too far into the story please help" - here you go.

“[some variation of My Character is evil so it's fine/a killer so it fits/just too disgusting to show their disability” - this is the one of these cases where I’m fine with disability erasure, actually. Please don’t make them have a facial difference. This is the type of harm that real life activists spend years and decades undoing. Disfiguremisia from horror movies released in the 70s is still relevant. It still affects people today.

"But [in-universe explanation why disfiguremisia is cool and fine actually]" - this changes nothing.

Closing Remarks

[large text: Closing Remarks]

I hope that this post explains my thoughts on facial difference representation better. It's a complicated topic, I get it. I'm also aware that this post might come off as harsh but disfiguremisia shouldn't be treated lightly, it shouldn't be a prop for your whump whatever to play around with. It's real world discrimination with a big chunk of its origins coming out of popular media.

With the asks that have been sent regarding facial differences, I realized that I probably haven't explained what the actual problems are well enough. It's not about some technical definition, or about weird in-universe explanations. It's about categorizing us as some apparently fundamentally different entity that can't possibly be kind and happy, about disfiguremisia so ingrained into our culture that it's apparently impossible to make a world without it; discrimination so deep that it can't be excised, only worked around. But you can get rid of it. You can just not have it there in the first place. Disfiguremisia isn't a fundamental part of how the world works; getting rid of it won't cause it to collapse. Don't portray discrimination as an integral, unquestionable part of the world that has to stay no matter what; whether it's ableism, transphobia, or Islamophobia or anything else. A world without discrimination can exist. If you can't imagine a world without disfiguremisia in fiction... that's bad.

Remember, that your readers aren't going to look at Character with a Scar #14673 and think "now I'm going to research how real life people with facial differences live." They won't, there's no inclination for them to do so. If you don't give them a reason, they won't magically start thinking critically about facial differences and disfiguremisia. People like their biases and they like to think that they understand.

And, even if you're explaining it over and over ;-) (winky face) there will still be people who are going to be actively resistant to giving a shit. To try and get the ones who are capable of caring about us, you, as the author, need to first understand disfiguremisia, study Face Equality, think of me as a human being with human emotions who doesn't want to see people like me treated like garbage in every piece of media I look at. There's a place and time for that media, and if you don't actually understand disfiguremisia, you will only perpetuate it; not "subvert" it, not "comment" on it.

I hope this helps,

Mod Sasza