Media Representation and Writing Characters with Facial Differences
[Large Text: Media Representation and Writing Characters with Facial Differences]
A writing (?) guide (?) consisting of an explanation of what facial differences are, some basics about the community of people with facial differences, a terminology guide that is extremely subjective, a very long explanation of the real-life effects of misrepresentation of facial differences, a subjective guide on why most tropes surrounding facial differences are awful and unoriginal, and the part that people actually want to see (I hope at least) AKA "types of characters I do actually want to see". As always, this post is meant for people who have no experience with the subject, and not in any way an attempt to tell writers with facial differences on what to do in their own writing.
What Does "Facial Difference" Mean?
[Large Text: What Does "Facial Difference" Mean?]
"Facial Difference" (FD for short) is an umbrella term for any kind of scar, mark, or condition that makes your face visibly different. This encompasses anything from not having parts of the face or having less of them (e.g. anophthalmia, anotia, hemifacial microsomia), having "more" to the face (e.g. tumors, neurofibromatosis, cranium bifidum), conditions affecting how the face moves (e.g. facial paralysis, ptosis, nerve damage), ocular differences (e.g. hypertelorism, nystagmus, strabismus), conditions affecting the colors of the face (e.g. rosacea, vitiligo, pigmentation conditions in general), a "look" that signals a specific disability (e.g. Down Syndrome) and approximately a million more things—scars, burn marks, craniofacial conditions, ichthyosis, visible cancers, and a lot more.
Despite popular opinion (popular ignorance would be more accurate because no one knows about it in the first place) people with Facial Differences have both a movement (Face Equality) and a specific word for the oppression we experience (Disfiguremisia). There is even the Face Equality Week that happens every year in May. This is a real thing that has been happening, and we are generally going unnoticed, even in the "representation matters" circles, the body positivity movement, disability spaces, and so on. There is an alliance of organizations dedicated to this called Face Equality International, who can help you learn about the real-world community and movement. They even have sections specifically about media representation, which is foreshadowing for how important this topic is to the community and for how long the "explaining the issues of representation" part of this post is.
And of course, if you have a facial difference/disfigurement, you can do whatever the hell you want when writing. Call your characters how you call yourself, subvert the tropes you want. I don't want to preach to people who already know all of this firsthand. This post is meant to explain some things to people who don't have experience with having FD.
[Large Text: Terminology]
There is a lot of words to describe people with FD. Some of them are alright, most of them are awful.
Please keep in mind that all of these terms (except for the... last one) are used by real life people. This isn't me saying "you can't say that about yourself" (more power to you, I don't care) but rather to educate able-bodied people that some words they refer to use with aren't as neutral as they think (at least not to everyone).
"[person] with a facial difference"—generally the most polite and widely accepted way to refer to us. That's what is generally used in the Face Equality movement, sometimes alongside the next term which is...
"[person] who has a disfigurement"—an OK term that is sometimes used interchangeably with the one above. However, many things that involves the term "disfigurement" to me sound kinda medicalized and/or like lawyer speech because that's what's used there. It's not offensive, just generally used in more official ways. Some people like it because of that, some people dislike it because of that.
"A disfigured [person]"—starting to steer into the "hmm" territory. Describing a whole person as disfigured is potentially fine, potentially weird, and it's very much a case-by-case basis. If the overall context is positive/neutral, it's probably fine (think: "look at him, he's Disfigured™!" vs "oh yeah the disfigured girl in the photo is Xue, we went to the same cooking class last year"). Could be way worse, could be slightly better.
"[person] who has a deformity"—"deformity" is such a negatively charged word that I don't understand how people (without FD) still use it thinking it's neutral. This sounds awkwardly medicalized in a "case study from the 80s" way which is definitely not a good thing.
"A deformed [person]"—pretty much the jackpot of bad terminology, the term deformed, the calling of an entire person by it, it has everything I hate about writers describing people like me. The only one that I think is even more awful is...
"Horrible/gnarly/nasty/monstrous deformity/scar/mark"—again, I'm impressed by what some people think is neutral wording. If you're searching a thesaurus for synonyms of "scary" to describe your character, it's time to just stop writing them. This is about using ableist terminology, sure, but I just can't imagine that someone calling their character that actually will represent FD well. It shows the negative bias and attitude of the writer. I can't imagine someone who writes like this actually likes the people they're writing about.
However, there is also one pretty awesome and simple way to describe them.
Say what they have. Specifically. Really. Assuming you know what condition your character has (which you should) it should be very easy. "She has Treacher-Collins Syndrome." "Xyr forehead has a port wine stain on it." "They can't fully open one of their eyes." It's clear and actually lets your readers know what you mean. You don't have to throw around euphemisms to describe someone not having a nose. When talking about a specific character (as opposed to a social group with similar experiences), this is the best option. If you're in doubt, just name the condition.
Tropes and Current State of Representation
[Large Text: Tropes and Current State of Representation]
If you have read basically any of my previous posts about FD then you probably know what I'm about to say in this section. Still worth a read though. I hope. Warning that this is long, but you probably expected that already.
One thing I will note at the start is that I'm aware that a lot of writers were already turned off from this post just because of the terminology section. I know that artists love describing people like me as ugly deformed monsters. It's literally a tale as old as antiquity, and that's how overdone and stale it is. Visibly disabled = ugly. I get it, I heard it a thousand times before, I hear it majority of the time someone is excited to tell me about how horrible and gross their OC's scar is. But now some guy from that group is telling you to like, maybe stop calling your disgustingly deformed character that.
I want to make it very clear that FD representation in media is not treated like a real thing that's worth anyone's time, even by the most "representation is so important!" writers. I guess it's too inconvenient to unpack the amount of baggage and uncomfortable implications this would cause. It's too good of a device in writing; everyone knows that if a guy with a scar shows up that it means he's evil, the easiest way to make a villain visually interesting is to make them a burn survivor, and if you need a tragic backstory for a serial killer just give them a congenital disability that caused literally everyone in the world to treat them horribly, so of course they started killing people. It's such a good moral signifier that literally every book and tale has done—pretty is good, ugly is bad. Dichotomy is so helpful.
What is less helpful in the real world is that what is considered "ugly" is generally very tightly bound to what visibly disabled people look like. Ugly Laws weren't just like, coincidentally including disabled people, and disability activists aren't still forced to speak out against being put in those "Ugliest People" lists by accident. This is all to say that facial differences are considered to be "ugly" completely uncontested, and you probably have this bias too, as the vast majority of people do. The whole "the character is ugly, then they become evil, if they're evil, they become ugly"... you need to be conscious to not do that. Don't make them evil if they're visibly disabled because it will always end up being the same old trope, no matter how many weird excuses and in-universe explanations you give. I want to put it in people's heads that you are writing about a community of people who are technically visible in real life, but have no large voices that the general public would listen to when it comes to how we are seen. The general public relies on media to tell them that.
Putting people with FD in your books or your art seems to suddenly be intimidating for a lot of artists when they realize that not only is facial difference a real thing, but people who have it can see what you write or draw (and your other readers will take some things out of what you write, subconsciously). When an author is faced with the fact that maybe they are doing harm with their writing, they either: suddenly don't want to do that anymore at all, or say: "I don't care! I'm going to be very innovative and make my very evil OC deformed!"—which is kinda funny to me that people actually seem to think it's edgy and cool to repeat the most tired Hollywood tropes, but that's the best we can get, I guess.
The attitudes that people have around the topic of facial difference and the whole "media impacts reality" are very interesting to me in general. On one hand, when I tell someone that I was bullied or ostracized because of my disabilities, no one is ever surprised. On the other hand, everyone is for some reason uncomfortable when I say that this doesn't just... appear out of thin air. People are taught from childhood that facial differences and the people who have them are scary, untrustworthy, or literal monsters. Media is a major factor in that. Like, looking back at it, it makes sense that my parents told me not to stare at other kids because they would get scared—and regardless of what you think about this, they were correct. After all, I looked like a kindergarten version of the bad guy from some kid's book. Other kids were able-bodied and looked like the good guy, I was visibly disabled and looked like the bad guy. That's the lesson kids get from media on how people with visible disabilities are: evil, scary, not to be interacted with. So they avoided me because of that while I had adults telling me to not even look in their direction. Dichotomy is so helpful, right?
And this doesn't magically stop at children. When I post a self-portrait or a selfie, I have to deal with grown ass people comparing me to sometimes an animal, usually a specific character from a movie, sometimes even making my face into a meme right away. But if people don't generally see people with facial differences on the daily, then how are there so many specific reactions and so many similar problems that we go through? If it's so rare, then how are people so quick to tell me the character I remind them the most of— Yeah, media. It's always media. It's almost funny how everything circles back to one thing.
I want you, the author, to understand the impact of misrepresentation of facial difference. If you feel uncomfortable because you have done these tropes before, good. That's a sign of growth or at least self-awareness. If you want to help instead of harm, you need to get over your (subconscious) biases for a minute and think about how a person with the same condition as your character would feel like reading about them. Maybe you are even currently realizing that that one OC with scars is just five harmful tropes glued together. Maybe you are going to reblog this and tell me in the tags that somehow your character decided to be like that, as if they have free will instead of being written by a biased human being. Or, as I said earlier, a lot of people will be annoyed by this post and keep doing their thing. Which is like... whatever.
Who cares, honestly? There are a dozen huge movies, TV shows, and shitty indie horror games every year that do this. It's so basic and normalized that whatever reach this post will have will change very little. I have been signaled "we don't care what you think about how we portray people like you" my entire life, I'm frankly more surprised when people do actually claim to care. You can, practically speaking, do whatever because the FD community is fully ignored by everyone and even if I'm disappointed or annoyed, I'm just one man and I know (from experience) that most people won't have my back on this topic. It's too ingrained in our culture at this point to challenge it, I suppose. I mean, there have been multiple media campaigns telling writers to treat us as people, and they had practically zero impact on the writing community. But, even with my absurdly pessimistic view on this subject, I still decided to write all this. Sure, there are no signs of the industry changing and the writing community doesn't seem to care much, but I still naively hope that maybe the right person will read this and at some point in the future I will be watching or reading about a character that looks like me and actually have a good time, and even more naively that maybe people will gain some amount of awareness of the damage that has been and still is happening to people with FD through media, so that the next time they see that the villain has facial scars for no reason they will think "damn, this sucks" the same way I do. And very, very naively, I hope that people who read this will start seeing us as people. Not villains, not plot devices, not monsters.
Sad (?) part over, now the fun (?) part. AKA the tropes! Yay.
"Dramatic Reveal of The Deformity"
Use of the word "deformity" very much on purpose here. This is arguably the most common trope when it comes to FD, and it's always awful. At the very best it links FD with trauma and talks in a Very Sad Voice about how having a FD is the worst thing imaginable, I guess ("X did this to me... now I'm Deformed For Life..." type of scene) and at worst it does the classic revealing that the main villain actually was a burn survivor under his mask, because of course he was.
In media, people with FD are evil. If they're not, then it's because someone very evil did it to them (the most evil thing of all—causing someone to have a facial difference. The horror!). It can't be a thing unrelated to someone's morality, there's gotta be evil somewhere around it. There is literally nothing good about this trope. Showing FD as something to hide? Check. Dramatizing FD? Check. Placing the way someone's face looks as the worst thing possible? Check. General treating FD as some kind of circus attraction to stare at with your mouth open? Check.
I made a whole post about this one actually, that's how much it annoys me. Putting your character with FD in a mask is so overdone, lazy, and boring I'm not even offended as much as I thought I would. It's like—really? Again? For the millionth time, the character with FD is forced to hide their disability? Is the author scared? What is the point of giving your character a visible difference if all you're doing is hiding it? And yes, I know that your character chose to do that for reasons that you as a writer somehow can't control. It's always so strange how it's the character that's in control and the writer is in the passenger seat when it comes to annoying tropes.
Since I originally made this post I've come to discover that this is way more common than my pessimistic ass thought back then. Here's a whole tag for this trope.
*"mask" here refers to anything that covers the character's facial difference (e.g. eye covering, surgical mask, whatever. It's about hiding it and not a technical definition of "what is a mask").
"Good Guy has the Tiniest Scar You Can Imagine, but Don't Worry! The Villain is Deformed As Hell"
A genre on its own. In the rare instance that a positive character has a facial difference, they have a curiously limited choice—you can have:
the thinnest, definitely-very-realistic straight line going through the eye (the eye is always either perfectly okay or milky for reasons the author couldn't tell you),
the same exact line but going horizontally across the nose,
and if you're feeling spicy you can put it around the mouth,
regardless of location, just make sure it doesn't look like an actual scar (certainly not a keloid or hypertrophic one) and is instead a straight line done with a red or white crayon. Interestingly, villains have unlocked more options which stem from scars, craniofacial conditions, burn marks, cleft lips, ptosis, colobomas, anisocoria, tumors, facial paralysis, to pretty much everything that's not infantilized, like Down Syndrome. These are always either realistic or extremely bloody. I sound like a broken record by now, but no, your morality has nothing to do with your physical appearance and being evil doesn't make a visible disability get more visible. Shocker. And don't get me started on...
"The Villain turned Evil Because They Have Scars"
Nice. Disabled people are evil because they're disabled, truly a timeless classic for able-bodied writers whose worst fear in life is being disabled. In case that needs to be said, having a facial difference doesn't turn you evil, doesn't make you become a serial killer, doesn't make you violent, doesn't turn you into an assassin with a tragic backstory seeking revenge for ruining their life. If anything, having a FD makes it more likely for other people to be violent towards you. Speaking from experience.
"The Villain Just Has Scars"
An impressive attempt at cutting out the middleman of "clumsily and definitely not ableist-icly explaining why getting a scar made them evil" and not even bothering with a tragic backstory or anything. They are evil, so of course they have a facial difference. What were you thinking?
"Facial Difference is a Plot Point"
As anyone who's read A Book will tell you, the only way to get a facial difference is to be in a very dramatic fight or an extremely tragic accident who will become a plot point and thus the facial difference is now Heavily Emotionally Charged and a symbol of The Event/The Tragedy. If you look at media, congenital FD isn't a thing, illness-related FD doesn't exist and boring domestic accident or a fall causing FD has never been seen. It has to be dramatic and tragic or else there's no point in them having it. A true "why are they [minority]" moment, if you will. You can't just be, you have to be plot relevant.
"Character gets a FD but then Gets Magically Cured Because They're Good"
Truly one of the tropes that make me want to rip my hair out. Curing your character with FD sucks just as much as curing a disabled or neurodivergent character. Who is this even for? That's not how real life works. This is some actual Bible shit, that's how old this trope is. The only thing you're doing here is making people think that those who do have FD just aren't "good enough". Every time I see it, I wonder what the author would think of the congenital disorder I have. According to this kind of in-universe rules, was I born evil and just never got good, or...?
"Character with FD has Self-Esteem Issues and Hates Their Face"
I admittedly mocked all the previous tropes because they're absurd, ridiculous, offensive, boring, all of the above, and have zero basis in reality. This one however... ouch, right in my own tragic backstory. This is unfortunately a very real experience that a lot of people with FD go through. I even have a hunch there wouldn't be as many if the general public didn't think of us as monsters, but I digress.
Yes, a lot of us have or had self-esteem problems, and a lot of us wished that we wouldn't have to go through all the BS we were put through because of it. Thankfully for you, you don't have to write about it! Seriously. You don't need to. As one million people have said before me, "maybe don't write about nuanced, complex minority experiences you haven't experienced" and I agree here. I have yet to see an able-bodied author get anything about this right. Instead of the deeply personal experience that involves both you, everything around you and the very perception of what others think of you that this is, somehow writers keep giving the tired "character crying and sobbing because they're 'ugly' now", because the author thinks we're ugly. Or maybe they're sad because all the other characters with facial differences are evil, and they didn't have the time to prepare their evil monologue for when they inevitably become evil in the sequel? Who knows.
"The Author Doesn't Know."
The author not knowing what their character actually has going on medically is common to a ridiculous extent—this applies to all kinds of disabled characters as well. You don't need to name-drop the Latin term for whatever your character has, but you need know what it is behind the scenes. You need to know the symptoms. You need to know the onset and the treatment or lack of it. Please do your medical research.
Things I Want to See More of in Characters with Facial Differences
[Large Text: Things I Want to See More of in Characters with Facial Differences]
The thing you might have noticed is that I want Facial Differences and People with Facial Differences to be presented as normal. Not killers, not SCP anomaly whatever, not monsters, not whump victim #4328, not evil mercenaries who have "revenge" as their only life goal. I'm aware that the term is tired, but I absolutely want Facial Differences normalized as much as possible.
I want to see more characters with facial differences...
who have friends that don't bully or make fun of them because of their appearance.
who have support from their family.
who know other people with facial differences—even if they're just background characters, or mentioned in passing. Marginalized people tend to gravitate towards each other, people with FD aren't some magical exception to this.
who know other people with facial differences because they're related. Seriously. There's thousands of causes of FD that are genetic.
who have different body types—in terms of disability, sure, but some of us are also just fat.
who are dark-skinned and have any FD other than vitiligo or oculocutaneous albinism.
who are disabled in other ways. A lot of us are Blind, Deaf, unable to speak, intellectually disabled, having issues with mobility, multiple of the above, or have a million other comorbidities.
who are fantastical in some way—preferably not the "secretly a monster" way. But a mermaid with CdLS or an elf with neurofibromatosis? That's cool.
who are allowed to be cute or fashionable.
who have jobs that aren't "stereotypical bad evil guy jobs". Give me a retail worker with a cleft lip, a math teacher with Sturge-Weber syndrome, a wedding planner with third-degree burns, a chef with Down syndrome. Something fresh.
who are reoccurring characters that just happen to have a FD.
who are those stock/generic characters that aren't typically associated with FD. Hero's mom has septicemia scars? Cool. The popular cheerleader at school has alopecia? Awesome. The bartender of the place the heroes secretly meet up at has Möbius syndrome? Goes hard. The kid that the MC used to hang out with before they moved somewhere else has Crouzon syndrome? Great.
who have their FD be visible.
who aren't ashamed of their FD.
who feel very neutral about their face.
who are proud of how they look.
who got their FD in a very boring way or were just born with it.
who have facial differences other than small scars.
who's angst is fully unrelated to their FD. I love me an angsty teen character. Even more if they are angsty about their crush, or basically anything that's not their disability.
who have a significant other who doesn't do the whole "I love you despite your looks" thing. It just sucks. Sorry. I would hate if someone said this to me.
who are children and aren't implied to be "cursed" or "demonic".
in genres that aren't just horror or thriller. RomCom or slice of life, anyone?
who aren't vigilantes/morally gray.
who aren't social outcasts.
I want to see stories with multiple characters with facial differences. I have nerve damage (paralysis) and facial asymmetry, and I am friends or mutuals with people with Williams syndrome, Bell's palsy, Down syndrome, neurofibromatosis, facial atrophy, ptosis... and a lot of other things. Your character would have (or, would probably want) some connection to their community. We aren't rare.
And, I want stories with a spectrum of facial differences shown. Of course, you can't represent the actual whole spectrum, but you can still aim for at a part of it. Don't give every single character with FD the same scar-through-eye + eyepatch combination. It's not unrealistic to have a range in your writing. Here is a list of facial differences you might want to check out for inspiration. Don't be scared to give them something rare—no matter how uncommon, people still have it. My specific condition is allegedly "extremely rare", <1 / 1 000 000 if you want to believe orphanet. I still want representation.
[Large Text: Closing Remarks]
Facial difference and the media is a topic that plagued me for the past two decades and won't stop ever, I think. It's a very unique relationship of a group of people who just aren't allowed to get into the industry and an industry that clearly hates them, loves to use their image, and defines how people see them all at once. There's this overrepresentation that is consistently awful and damaging to an absurd degree. Most people know more villains with FD than actual people. Certainly doesn't feel great to be one of the aforementioned actual peoples. But I hope that this will change—the negative portrayals that are plaguing the FD community will slowly fade out and a newer wave of portrayals will come in, hopefully this time realizing that we are real people and care about us a bit more.
The thing with facial difference is that it's pretty much impossible to make a specific guide of what it's like and what to do in context of writing because it's an incredible vast category that includes conditions that are very different from each other. That's why this post was more focused on "why you should care in the first place" (sorry for the clickbait) rather than being a straightforward guide that would still be very lacking even if 20 different people were collaborating on it. I really, really encourage everyone who got through this rather long post to do their research on what they plan to write about, be conscious of their own biases, don't pull inspiration from movies because they're all hellholes full of tropes and just sit down for a minute, think of the real-world people with facial differences, and read what we have to say. I know that drawing a guy with a line across his eye is more fun than realizing you're low-key scared of or uncomfortable around the real-world equivalent, but sometimes you have to get over yourself and try to be a better person. Caring about the people you write about is, dare I say, essential. That will certainly make your writing of us better :-) (smiley face with a nose)
If you have any specific questions, feel free to send an ask.
