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cripplecharacters · 20 days

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How to Support People with Facial Differences - the Face Equality Week 2024 Special

[large text: How to Support People with Facial Differences - the Face Equality Week 2024 Special]

Today is the 13th of May, which means that the Face Equality Week has just started. This year's theme is “My Face is a Masterpiece” which is probably my favorite sentence ever said about having a facial difference. Huge fan, should be used way more often in my opinion.

Because of this occasion, I would like to share some thoughts about Face Equality that I think are rather entry-level, i.e. you don't need to know much to execute these, but you can still support us.

Stop the stare.

I know it's fun to stare - or so I guess, at least - but maybe you shouldn't. Next time you see someone who has a scar or who's face does not move the same way as yours, just mind your business. We can tell when you're “discreetly” looking.

Don't call us deformed.

Knowing how the people you're trying to support actually call themselves should be an absolute first step, but most people still fail here. Most of us don't appreciate being called “deformed”. I certainly don't. Say “facial difference”, or “disfigurement” if you must. It's 2024. Leave “deformed” to medical reports from the 70s.

No more “What happened?!”s.

If you aren't a doctor, there's a high-to-100% chance that it's none of your business. It's cool that you're curious - keep it to yourself.

Stop insinuating that we are ugly.

“Support people who are ugly!” isn't very supportive. I would say, not in the slightest. Say “people who don't fit the current beauty standards” if that's what you mean.

Or, to go with this year's theme, “people whose faces are masterpieces” : )

Use critical thinking online.

Is the reaction photo actually funny, or is it just a person with a craniofacial condition? Is the meme actually a meme, or is it just making fun of a person with a facial disfigurement? Is body-shaming suddenly hilarious to you when the person shamed has strabismus?

If the entire punchline is “lol they have a disability xd”, it's ableism. Plain and simple.

To go with the point above - your joke is probably not funny.

We get it! You can't help telling us how "you're going to hell for laughing" (which yeah, probably) and how we remind you of the ugliest character you have ever seen. I guarantee you that we heard it, and that you are behaving like an edgy middle schooler who hasn't "found out" yet. It's boring and annoying. Also ableist, but you're aware of that already if you're saying that you're going to hell.

Stop with the goddamn trigger warnings.

We aren't “body horror”, we aren't “gore”, we aren't something that you need to advise your viewers to use their discretion over. Every “graphic footage: child with neurofibromatosis” and “#tw burn scar” is a sign of ableism and disfiguremisia. People with facial differences deserve to be seen. Ableds can survive seeing a person without a nose.

Do a basic reading on what disfiguremisia is.

New word! And a pretty damn important one. It's a brand of ableism that intersects with more or less everything, and it means discrimination and hatred of people with facial differences/disfigurements. The bullying, harassment, endless name-calling, and microaggressions are all results of disfiguremisia. The ways in which everything is harder for us isn't some unchangeable rule of how the world works, it's just an extremely prevalent type of discrimination.

Understand that we are people.

I know, revolutionary - and yet impossible for so many people to get. We can be a visual representation of evil when it's necessary, we can be a feel-good inspirational story on a morning talk-show, but not much else, it seems. In reality, we are complex, we have our own lives, we can be happy and sad and have the same exact joys and worries that you have.

Hey, artists - facial differences don't make you evil.

Title stolen from a great essay by Lise Deguire (link). When's the last time you saw a positive character with a facial difference that wasn't inspiration porn? I mean a character that's not edgy, full of angst, a murderer, or a villain. Based on what you see in the media, you'd think that having a scar renders you evil on the spot, but in reality it just makes you loathe how artists apparently think you are like. It's boring, it's overdone, it's ableism. Stop doing this, and start noticing when it's being done. Point it out if your friend is writing their new villain to be an evil burn survivor. This kind of portrayal needed to stop ages ago, but tomorrow will be a great time as well.

Before you reply with “I've never seen this” - Darth Vader, Lion King’s Scar (subtle name, great thing to teach kids!), Freddy Krueger, Voldemort, we could be here forever. You're just not paying attention.

Pay attention to where we are not included.

As discussed, there are some places where you see us all the time. But where do you not see us?

Advertisements (unless it's for a scar-removal cream, of course). Fashion shows. Magazine covers. Romance movies where we are the main character.

We deserve to see ourselves in what's around us in the same way able-bodied people do. Trying to make it seem like we don't exist - that's deliberate.

Interact with our art.

We draw, write, sing, act in movies, we do everything! Support us in the most tangible way - leave us a nice comment, read our books, listen to our songs. Watch movies where actual people with facial differences star, not pseudoinspirational stories about how “being disfigured is ok” where they shove an able-bodied actor into a full face prosthetic just to not have an actor with a disfigurement on set.

Include us.

As this year's Face Equality Week calls for, include us. In art, in movies, in books, in your life. Show us as positive people who are valuable, who are a part of your community - I guarantee that we are in every one that's out there. The world is hostile and unwelcoming to people with facial differences - be the change, wherever you are!

I know that it is different from the usual posts I make, but I hope it was somewhat educational. I just like to use every occasion that I can to force Face Equality into people's heads. To make this at least a bit about writing to keep the blog's theme, I will say that if you want to write about us, you need to care about us in real life as well. Otherwise, it's shallow and pointless.

Below the readmore are some links/resources that you can click to educate yourself further. A lot of them lead to Face Equality International because they have just about everything you should know. If you want to be a better ally to people with facial differences, I heavily recommend them!

#MyFaceIsAMasterpiece

mod Sasza

https://faceequalityinternational.org/2023/04/why-i-will-not-hide/

https://www.psychologytoday.com/gb/blog/disability-is-diversity/202111/hidden-community-the-movement-face-equality

https://faceequalityinternational.org/2022/05/facial-differences-in-the-media/

https://faceequalityinternational.org/2023/04/advertising-excludes-women-with-faces-like-mine/

https://www.phoenix-society.org/resources/burn-community-bookshelf

https://faceequalityinternational.org/about-fei/international-face-equality-week/

https://faceequalityinternational.org/2023/04/hidden-from-view-women-with-facial-differences-in-the-media/

https://www.phoenix-society.org/resources/i-dont-see-your-scars

whoa thanks for actually clicking the readmore!!

#mod sasza #face difference #face equality week #face equality #facial difference

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cripplecharacters · 19 days

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Facial Differences that You Should Consider Representing in Your Writing More

[large text: Facial Differences that You Should Consider Representing in Your Writing More]

As it has been said many times on this blog before, facial differences are a very wide spectrum - there’s thousands of conditions that cause it, and they’re often extremely different from each other! It’s an incredibly diverse category almost by definition. But…

In books, movies, and our inbox, it seems that a traumatic battle scar is the only facial difference that exists. I find this rather frustrating because I would like to see the real life diversity to be actually considered by writers when creating characters - and that’s exactly what this post is for. I hope that by making people just aware of the myriad of options they have, I can help a bit.

This isn’t to say that you shouldn’t write characters with scars, it’s to say that there’s more for you to consider. Just like not every physically disabled person has hip dysplasia and not every neurodivergent person has epilepsy, not every person with a facial difference has scars!

Of course, this list isn’t exhaustive - no such list exists, it would be like “list of every disability ever”, it simply can’t be done. This is just a dozen random facial differences that I would like to see incorporated into characters more often!

Facial paralysis Exactly what the name implies. There are many types of facial paralysis - complete, partial, bilateral, unilateral, chronic, acute, and it can affect the whole face, or only part of it. Sometimes it can cause problems with speech or dry eyes (mostly the latter), but it’s frequently just primarily a visual difference. A person with facial paralysis might be completely unable to make facial expressions at all if it’s severe, or have a lop-sided smile and inability to raise an eyebrow or control an eyelid like me. Causes include cranial nerve damage (especially the 7th nerve, which is called facial palsy), Bell’s palsy, Möbius syndrome, or multiple sclerosis! It can be congenital, like in my case, or acquired, like in most cases - mostly due to stroke. Here I would write something about the current media representation being good, bad, or what tropes to look out for but I don’t know a single character with it. So :-)

Anotia/microtia Microtia is a congenital facial difference that affects the outer ear(s) - as the name implies, they’re smaller than average; anotia means a complete lack of them. This usually will also result in being d/Deaf or hard of hearing in that ear, as the ear canal can be smaller or closed (depending on the “grade”). People with microtia who decide on using hearing aids will usually wear a bone-anchored hearing aid, which looks very differently from the “regular” HA; it’s worn with a headband. Microtia can be the only facial difference that a person has, but it can also be a part of Goldenhar syndrome, Treacher Collins syndrome (mentioned below!), or hemifacial microsomia.

Congenital Trochlear Nerve palsy I have a subtype of this, and because it happens to have the most boring name in existence I have never seen anyone talk about it, certainly not see a character with it. So! CNIV palsy (again, an incredibly catchy name) is a disorder of one of the very-easy-to-damage nerves that allow eyes to move. It causes constant double vision, severe strabismus, and progressive facial asymmetry. A person with CNIV palsy will have a 24/7 head tilt to the side and will have their chin tucked in, which causes said asymmetry - facial features on the side of the tilt will sag down, the eye will “sunk” in, and because it’s congenital, the jaw can grow to be misaligned (like mine!). Over time, it causes neck pain and kyphosis, so add chronic pain to that. Trochlear nerve palsy can be congenital, acquired, traumatic, and even extremely rarely genetic (that’s me! allegedly <1 in a million). However, most acquired cases are only temporary, and “fix themselves” with the passage of time. Again, I would love to write something about CNIV palsy representation, but I’m fairy confident it doesn’t exist : )

Sturge-Weber syndrome The most visible part of SWS - that you might be familiar with - are port wine stains! In this syndrome, they tend to be large and generally cover the forehead-eye area. Around 15% of people with any kind of port wine stain on their face have Sturge-Weber syndrome, and even more when it comes to larger ones. Most people with SWS will have epilepsy since childhood, and many will develop glaucoma (which causes blindness) if the PWS is around that eye. Hemiparesis (one-sided weakness) can also sometimes happen on the opposite side of the PWS. Here is a short article about media representation from a person with SWS!

Cystic Hygroma Also known as lymphangioma, it is a bump that mostly happens on a person’s lower face and/or neck. It’s almost always congenital and a result of a blockage in the lymphatic system (thus lymphangioma). Sometimes, if it affects the mouth or jaw, it may cause a speech disability where the person’s speech might not be fully understandable, or cause an airway obstruction; this generally means that the person has to have a trach tube in their neck to breathe. Here is a short article about living and growing up with cystic hygroma by Atholl Mills!

Congenital melanocytic nevus A complicated name for a specific kind of birthmark! Melanocytic means related to melanin, so it’s a black or brown birthmark that can show up on any part of the body and be of almost any size. Sometimes it can be hairy as well. While CMN doesn’t usually cause any problems, people who have it have a higher risk of skin cancer, epilepsy, and brain tumors. Here is a short article on representation - among other things - by a person with CMN!

Ptosis Ptosis is actually really common - I can almost guarantee that you have seen someone with it - but for some reason it never shows up in media, unless it’s to show that a character is under the influence or vaguely creepy. Ptosis is simply a drooped eyelid. It’s caused by damage to the third cranial nerve, which can be congenital, acquired, traumatic, etc. It’s very common in myasthenia gravis and CHARGE syndrome. In most cases ptosis is a visual thing, but it can sometimes cause problems - for me, it partially obstructs my vision and for some people who acquired it later in life that can cause pain (due to having to constantly lift the eyebrow). Ptosis is often misunderstood, and people tend to make bizarre assumptions about those of us who have it - even Wikipedia cites “looking sinister” as a symptom (not that I particularly trust Wikipedia as a source, but it shows the general public’s view quite well). In real life, we are normal people and all these “drunk/high/rude/evil” associations aren’t true at all.

Treacher Collins syndrome You have probably seen a person with TCS at some point, as it’s not that rare. This is a genetic, congenital disability that affects the development of the face. The bones of the jaw and cheeks are underdeveloped, eyes have a downturned shape, and microtia/anotia is often present as well. A lot of people with Treacher Collins are d/Deaf or hard of hearing. Sometimes, the small jaw might cause problems with breathing, which is why a lot of people with TCS will have a permanent tracheostomy tube in their neck. Similar to ptosis, eyes in TCS are often seen as “looking sad”, but that’s an incorrect assumption - that’s just how they look like. The main and only big representation of TCS in media is that one awful movie from a few years ago, that was literally just inspiration porn featuring an able-bodied actor based on a shitty book, made by an author with some sort of abled-person guilt. Very cool, don’t do that.

Crouzon syndrome Crouzon syndrome is a type of craniosynostosis; a congenital condition where a person’s skull fuses too early. There are other disabilities that can look somewhat similar, like Pfeiffer or Apert syndrome, but they are different! CS will affect the person's skull - it will be taller than usual, eyes - they will be large and bulging, midface - it's often smaller than average and can look sunk in comparison to the jaw and forehead, and more! Sometimes people with Crouzon syndrome are d/Deaf or hard of hearing (very common with craniofacial differences), or experience long term effects of hydrocephalus, which happens fairly often. Here is a short article by Mikaela Moody about movie representation - and her piece on how it to be trans while having a facial difference, which I relate to a lot and wanted to share:-)

Phthisis bulbi Phthisis bulbi is something that I have mentioned on this blog before, as it logistically should be represented way more often in fiction than it currently is. It's also known as the “end-stage eye” which is a pretty metal name. This is an ocular difference that can result after trauma to the eye. It can also result from a million other things, but trauma is apparently the most common thing to happen to an eye in fiction, so. With phthisis bulbi, the eye shrinks, sinks, and everything inside becomes stiff; this is permanent, and the eye isn't functional anymore - it's blind and unable to move. The only treatment is to have the eye removed, especially if it causes pain. If you're writing a character who got a Hot Sexy Scar over their eye and still has that eye, they probably should have this (and yes, the “shrunk and sunk” part is mandatory, you can't just make the eye lighter and call it a day).

Frontonasal dysplasia Frontonasal dysplasia is a congenital facial difference that affects the structure of the face. While it's a spectrum with a lot of variety, most people with FND will have hypertelorism (eyes spread widely apart), a flat and broad nose, and a cleft going through the middle of the nose. Other facial clefts (not necessarily just cleft lip) are also common. Sometimes, someone with it can also have cranium bifidum (meaning a brain/meninges that protrude through the skull, similar to how spina bifida works), or intellectual disability related to the potential absence of corpus callosum. Rarely, limb differences can also be a part of it; absent tibia, extra toes, or clubfoot. Again, I’m unaware of any representation of FND outside of “scary birth deformity” on medical shows :--)

Parry–Romberg syndrome PRS is also known as progressive hemifacial atrophy, which is a much more descriptive name. It’s an acquired facial difference that people just get for unknown reasons, mostly before the age of 20 and usually between 5 and 15. Generally, PRS is considered to be slowly-progressing, but this can vary pretty widely between different people. As the name implies, it causes atrophy in the face, which affects everything from skin to fat and muscles to sometimes even bones. Some people will also experience skin darkening, alopecia (hair loss), or trigeminal neuralgia (very severe nerve pain) on the atrophied side. The difference between the two sides can be very pronounced, with a visible line between the halves showing up on the forehead. Again, no existing rep that I know of :-)

And as always, I recommend this short PDF that in my opinion any writer who wants to include a character with an FD has to read. Additionally, you can also check our #face difference tag, this primer on facial difference, or this piece on making sure you’re not contributing to disfiguremisia.

Also apologies for the amount of “idk what to say about already existing rep because it literally doesn’t exist afaik” but I hope it illustrates the problem :-)

Happy Face Equality Week!

mod Sasza

#mod sasza #face difference #disabled character ideas #writing guide #writing resources #writing advice #writing help #face equality week #long post

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