Mikaela Moody on the reason she created the term disfiguremisia and its relevance at Halloween
My name is Mikaela Moody. I'm visibly disfigured by a genetic condition called Crouzon's syndrome. I'm 27, a white British trans woman, a musician, and a writer (mostly on Twitter).
Autumn is one of my favourite times of year – mostly because of the lead-up to Christmas, but Halloween is neat, too. I like the fun side of Halloween (I'm not a huge fan of being scared!); I like ‘spoopy’ Halloween. The proliferation of green, purple and orange is charming, and I enjoy the kitsch, and the familial atmosphere of kids in costumes and pumpkin patches.
As a Disfigured person, the contemporary, popular form of Halloween doesn't really like me back. Or rather, it likes me and my disfigured, disabled, neurodivergent friends in a creepy way. Halloween uses us. Whether gently spooky or outright terrifying, Halloween so often shuts out disfigured, disabled, and neurodivergent people because history, fairy tales and prejudice say that we're inherently scary.
We're the villainous subjects of films and costumes, and our disfigurements, disabilities and divergences are shown as weird at best, or at worst as punishments, to deliver a moral message to the audience.
"Representation in entertainment and factual media has consequences"
Examples include Freddy Krueger, the Phantom of the Opera, and any number of other characters whose storytellers deem them worthy of the ugly stick because of a deficiency in goodness. Disfigurement becomes a costume – a problem not restricted to Halloween – and apart from the vilification of our (irl morally-neutral) conditions, this stings because disfigured people are almost never chosen to represent ourselves in visual media, even on the occasion that we get to be heroes. See Mask. See last year's Wonder.
There are exceptions, like Under the Skin, which features Adam Pearson representing his own condition as a person with neurofibromatosis, without a villainous or tragic angle to his character. Unfortunately, a) this is a film I still haven't seen since it's horror, and b) such representation is as thin on the ground as unwrapped sweets on November 1st.
And representation in entertainment and factual media has consequences, such as those felt by South Carolina cancer survivor Kirby Evans, whose facial scarring drew the disfiguremisic ire of a local proprietor, leading to his dismissal from the premises, and a subsequent GoFundMe in Evans’ support.
"As a Disfigured person, I needed a word like ‘disfiguremisia’ to describe what happens to people like me, socially and institutionally"
‘Disfiguremisia’ is the term I came up with to describe the erasure of, and prejudice against, disfigured (or visibly different) people, with ‘disfiguremisic’ its adjective form.
There's been a lot of discussion within the Disabled Twitter community about the continuing efficacy of the suffix ‘phobia’ to describe bigoted views, given that people with legitimate phobias can get caught in the crossfire. The use of ‘misia’ as a suffix came out of that, and I decided to compound it with 'disfigure'. My personal pronunciation is 'dis-fig-uh-ruh-mis-ia', which I also think is a rather elegant way to describe a pretty ugly thing - if you'll excuse a Disfigured lady her pun.
Chosen with agency and not at the behest of a privileged peer (or overseer), labels allow marginalised people to express the different ways we're separate and are separated from people who have more institutional privilege, across any and all axes. As a Disfigured person, I needed a word like ‘disfiguremisia’ to describe what happens to people like me, socially and institutionally. It empowers me, just as choosing to own ‘Disfigured’ (and to capitalise it, since it's an integral part of me) does.
Without a word like this, prejudice against disfigured people is lumped in with ableism (often accurately), or more cumbersome terms like appearance shaming, or bullying, which don't describe the breadth of what I intend ‘disfiguremisia’ to mean.
"I am Disfigured, and I choose the title ‘Princess’ on Twitter because it's a nice, fun, harmless way to claim some traditional femininity"
It’s particularly relevant this time of year, and I choose to reflect that on Twitter. I've used the title ‘Disfigured Princess’ for over a year now, referencing my identities as a Disfigured person and a trans woman, and (vitally) as someone who is both at the same time, and read as masculine due to conceptions about each. I am Disfigured, and I choose the title ‘Princess’ on Twitter because it's a nice, fun, harmless way to claim some traditional femininity.
This Halloween, following time-honoured Twitter tradition, I've added ‘Horrifically’, to reclaim a label oft-used in descriptions and synopses of horror and thriller films which feature a character tragically (or as punishment) disfigured. When I talk about Disfigurement on Twitter, it's generally about how entertainment media reinforces disfiguremisic tropes, but it's worth pointing out that ‘horrifically disfigured’ is not a description doled out to fictional characters only. Claiming it as a Twitter Halloween name is a fun, tongue-in-cheek way to take back something which has done harm.
And many of us disfigured people, disabled people, neurodivergent people, would love to have the same access to Halloween as everyone else. We want the spooky stuff, and we don't see why we need to be harmed institutionally for it to be effective. So when you tuck yourself in for a slasher marathon, or put on that ogre mask to greet trick-or-treaters, take a minute to consider what you could be doing to make October a month of safe, inclusive spooks for everyone.