“Are We Really That Scary To Y’all?”: Person With Marfan Syndrome Goes Viral With 1M Views For Calling Out Horror Writers’ Choice In Monster Design
Interview With Author
There’s something quite charming about horror films, isn’t there? The juxtaposition of being frightened and alert with the fact that you’re underneath the soft blankets of your pillow fort, knowing that nothing can actually harm you, is one that brings about a very particular kind of pleasure.
However, this can be compromised when you feel as though you’re relating more to the monster rather than the protagonist, and not in a villains-are-far-superior-kind-of-way. When the only fictional character to reflect your body shape is a horrendous creature everyone tries to run away from, one may start to question—why in The Shining is this the norm?
One TikToker, named Christopher Ikonomou, had just this question. It seems that many horror writers have noticed Marfan syndrome and decided to take some inspiration from the disability and into their monster design. Christopher believed it was about time they got called out for it.
He made a TikTok, it went viral, a discussion on disability representation in film ensued, now we’re here! We got in touch with Christopher to ask some questions about it all and he very kindly agreed to answer them. So, dear readers, make sure you stick around for it all, and leave your opinions in the comments below. Let’s get into it!
Christopher Ikonomou, a 21-year-old student living with Marfan syndrome, is calling out horror writers for modeling monsters after people with disabilities
Image credits: cpikoart
To be different in a world that prefers perfection is tough, especially when you’re young and fitting in can be the difference between having an epic childhood and one that would rather be forgotten. When you’re an adult, you have more choice in company and authority to tell people to find the highway to hell if they’re being insensitive. Or mayhaps, tell horror writers to find more creative ways to portray monsters that won’t condition a whole generation of people to stigmatize those, which resemble them in real life.
This is the story of Christopher Ikonomou, a 21-year-old student living in Los Angeles. There’s many aspects which make Christopher unique, yet the two that we’ll be focusing on today are his love for horror movies and a disorder he lives with, called Marfan syndrome. Interestingly enough, these two have collided in an intriguing way, causing a very needed discussion to take place.
Marfan syndrome is an inherited disorder that affects the fibers that support and anchor the organs, such as the heart, eyes, blood vessels and the skeleton itself
Image credits: cpikoart
According to Mayo Clinic, Marfan syndrome is an inherited disorder that affects the fibers that support and anchor the organs and other structures in one’s body, such as the heart, eyes, blood vessels and the skeleton itself. It is caused by a defect in the gene that enables the body to produce a protein that helps give connective tissue its elasticity and strength. It can either be inherited or developed spontaneously.
People with Marfan syndrome are usually tall and thin with incredibly long arms, legs, fingers and toes. The risk of abnormal curves in the spine, such as scoliosis, foot and lower back pain, as well as eye issues, such as retinal detachment and lens dislocation, and serious heart issues are just a few of the complications that can follow the diagnosis.
If the large blood vessel that carries blood from the heart to the rest of the body is affected, the condition can become life-threatening, requiring medications and preventative surgery to keep everything under control. Christopher himself had an aortic root replacement this year.
Image credits: cpikoart
Image credits: cpikoart
The condition affects not only the appearance of the body but carries various complications, such as scoliosis, foot pain, eye and heart issues, and more
Image credits: cpikoart
The condition can lead to more than just medical complications, especially when we consider how unforgiving society can be to those that look different. “I have experienced a lot of bullying growing up and in my adulthood because of my visible illness, and much of it manifests as people seeing me as an inhuman creature,” Christopher told Bored Panda, revealing that dozens of people with Marfan have contacted him to share the fact that they’ve gone through the exact same treatment.
“Despite the negative comments and incessant staring I’ve experienced from nondisabled people, I have come to love my body and am proud to be who I am,” he said. “I often reclaim the idea of being a scary disabled person or a ‘freak’—but I know we all deserve better because we are not the monsters many compare us to.”
He believes that most of the hostility stems from a poor depiction of Marfan syndrome in media. “People see these representations in horror films and it implicitly affects how they treat people who look like those monsters in real life,” he continued. “This then creates a positive feedback loop where our bodies are reinforced as innately unsettling and more writers decide to use us as inspiration to evoke that feeling in audiences.”
The syndrome can become life-threatening, requiring medications and preventative surgery. Christopher himself had an aortic root replacement this year
Image credits: cpikoart
@cpikoart T-2 weeks until aortic root replacement surgery! 🫀 #MarfanSyndrome #ChronicIllness #Disabled #HeartSurgery ♬ Blade Runner 2049 – Synthwave Goose
Having been subjected to bullying and incessant staring, he believes that most of the hostility stems from a poor depiction of Marfan in media
Christopher decided to take a dig at horror writers using people with Marfan syndrome to inspire their monster designs in a TikTok he posted on December 8th. Soon, the video went viral and, at the moment of writing, has over 1M views. It opened the eyes of many to an issue that’s very rarely spoken about and that is the representation of disabilities on film.
To give some context to the genre itself, ‘strange,’ ‘grotesque,’ and ‘dangerous’ are some of the ways to describe the perfect horror movie villain. Neil Chase, award-winning screenwriter and author of the horror-western novel Iron Dog, argues that the way to write monsters is to consider the fear of the unknown, the feelings of being out of control, and the primal human instinct to survive.
However, whether it happened consciously or by accident that the main monster in the film resembled someone with Marfan, is not as important as the impact it has on those that feel misrepresented and taken advantage of.
Being a huge horror movie fan (can relate!), Christopher would like the genre to become more aware of the impact it has on people with disabilities. “My criticism comes from a place of care; I want more people to fall in love with the genre like I have, but these representations push people like me away,” Christopher said.
Being an avid horror fan, he noticed the monsters that looked like someone with Marfan syndrome. In movies such as “Rec” (2007)
Image credits: Filmax
One of the films that Christopher told Bored Panda about was Rec, a Spanish found-footage film about an infection ravaging a small apartment complex, and the empathy he felt towards the antagonists.
“The patient zero and final infected person we meet is Tristana Medeiros, a girl who has been held captive and experimented on. When I saw her, I couldn’t help but literally see myself, in her height, her knocked knees, her disproportionately long and thin limbs and fingers, even her posture (one I walk with having undergone spinal fusion surgery),” he explained.
“I understood why people jokingly (and sometimes cruelly) say I look like her, because I do. Not because of anything to do with her character, or the plot of the film, but simply because of her body. I empathize with her just as I had with the other victims of the film, while the rest of the world sees her as a terrifying antagonist.”
Other examples of films that feature monsters with Marfan syndrome–inspired looks include Mama, Slender Man, It, and The Conjuring 2. Interestingly enough, all of the characters are played by the same actor—Javier Botet—who actually has Marfan syndrome, however, one should also note that there are other actors who don’t have Marfan, playing similar characters as well, such as Doug Jones in The Bye Bye Man and Carel Struycken in Gerald’s Game.
“Mama” (2013)
Image credits: Universal Pictures
“Slender man” (2018). “The only way people are being conditioned to see my body is through a terrifying monster or villain,” Christopher said
Image credits: Sony Pictures Releasing
Now, to be the Devil’s advocate for a split second, horror comes in all shapes and sizes, and it can be argued that each sub-genre of monster has a root in real life. Clowns, dolls, zombies, witches, mummies…they all tap into the unknown. Mayhaps the issue lies with the fact that we as a society are highly conditioned to see a very narrow set of people that fulfill the requirements of normality?
“I think the problem definitely starts with our bodies not fitting into the ‘ideal,” Christopher said. “Very few people fit the ‘perfect’ body set by societal standards, but many marginalized groups experience a step further than that. It’s one thing to not fit in; it’s another to have people actively portray your body as evil, demonic, or scary.”
“It” (2017)
Image credits: Warner Bros. Pictures
Potentially the most important thing to note here is the fact that we rarely see a disabled person being portrayed in the media whose personality and storyline don’t revolve around the disability itself. Annie Segarra, an advocate for disability rights, argues that mainstream movie characters with disabilities are either portrayed as being tragic and depressed, or they exist only to further the narrative of the (typically able-bodied) main character, sending a message that people with disabilities are incapable of living happy and successful lives.
Furthermore, as Christopher continued to explain, monsters in horror films are the “majority of the ‘representation’ people with Marfan syndrome get in the media,” which conditions viewers to associate bodies of those with Marfan with those of a terrifying monster or villain.
“I am not saying that actors should be ashamed to play these roles or that these films are inherently terrible. I am saying that people with Marfan should be represented across all roles and characters, and until then, the way these monsters are designed will continue to have a negative impact on how people see our community, even if it’s unintentional or implicit. My only hope is to raise awareness of how it affects us and hope some writers at least consider it.”
“The Conjuring 2” (2016). Christopher is raising awareness on how this affects the community, hoping that it’ll inspire some horror writers to think twice
Image credits: Warner Bros. Pictures
Hundreds of people supported the message of the viral TikTok, yet there were those that didn’t see the issue with such monster designs, arguing that horror writers are just trying to invoke a fear of death, the design having nothing to do with villainizing real people with disabilities.
“It’s a valid perspective and I don’t want to take away from other people’s opinions on these depictions, however, intention doesn’t erase impact,” Christopher said in response. “In the end, these monsters parrot Marfanoid features in an attempt to look creepier and scarier, even if the writer doesn’t know the symptoms by name.”
“Could it be a coincidence? Absolutely. Does that erase how people perceive the character and, therefore, real people who look like that? I don’t think so, especially when productions purposefully seek out talent with those symptoms to portray the characters (i.e. hypermobility, ‘unusually’ long limbs and fingers/toes, extreme thinness and height, etc). This connection may be unintentional, but because our community literally has no other representation in media, it has a real and scary impact.”
He continued to say that “when we are exclusively represented this way, it bolsters people’s implicit bias about disabled people and further pushes us outside of the norm in the real world. (And honestly, I don’t want people to look at people like me and fear death!)”
People with Marfan should be represented across all roles and characters, and until then, these monster designs will continue to have a negative impact on the community
Image credits: cpikoart
The time is now for the film industry to open up their doors to the largest minority population in the world. The industry needs to take advantage of an untapped market that can authentically add another layer to film and TV shows, and as Lawrence Carter-Long states, imperfect beats absent.
More accurate portrayals in movies and pop culture, and the inclusion of disabilities in people’s experiences, may lead to the stigma surrounding disability to dissolve. By questioning the world around us and pushing for change, we can evolve into a better functioning and more accessible world for all.
You can watch the viral video, which started the discussion on disability representation in film, here:
@cpikoart Like damn are we really that scary to y’all, give it a rest 😭 #horror #fyp #HorrorVillains #HorrorMovies #HorrorFan #REC #IT #Mama #Barbarian #JavierBotet ♬ original sound – Christopher (xe/he)
Thanks to Christopher, we can start having more discussions that may actually lead to change! He would like the Marfan community to know that “you deserve to feel human and to see positive depictions of yourself on screen. You are not a monster and you are not alone.”
He also asks the rest of society to consider this perspective and the impact monster design has on an overshadowed group of people. “At this point in time, only 2% of on-screen characters are disabled and 1% of writers in Hollywood are disabled despite disabled people making up 26% of the US population. There are so few of us actually in the room when these characters are created. I hope sharing my perspective broadened yours so that we are not the only ones speaking up. Just as you deserve to be seen in your entirety, we do as well.”
We wish Christopher all the best in his endeavors in the future! Let us know your thoughts in the comments below and I wish you all a great day!
Hundreds of people showed their support for Christopher, whilst also making fun of horror writers
However, there were those that disagreed, seeing nothing wrong with this type of monster design. Let us know your thoughts in the comments!
Image credits: www.facebook.com
This is absurd. Nobody that watches a horror film containing monsters is associating them with disabled people. This really is overreaching. Most of these "monsters" aren't supposed to depict disabled people's bodies nor do they encourage inaccessibility, they're supposed to depict the uncanny, the frightening, the impossible like corpse, zombies, vampires, the paranormal. I'm certain nobody is looking at Christopher and thinking xe looks like a zombie spirit. In any case it's HORROR, it's not supposed to be wholesome. If it triggers you ,JUST DONT WATCH IT. is the director supposed to consult with the 8 billion people on the planet and learn what offends them before putting anything in his movie?
Blows my F*****G mind what some folks are triggered by...
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While I simpatize and can see where he is coming from, this post alone proves that his assumptions are an overreach. Looking at these pictures alone doesn't cause fear (maybe the blister one causes a little disgust). What causes fear and what turns someone into a villain is the plot. We are afraid of a shark that remains mostly unseen because of a song. None fears these characters alone. He should redirect his energy elsewhere in my opinion
The actor who plays these characters has the same condition. He seems just fine with it. Everyone needs to relax and realize the world cannot coddle you.
I'm pretty sure Joey Ramone had Marfan's too. He also had a parasitic twin surgically removed from his back. Both I would think could be in horror movies, however he was just so wonderfully talented and the furthest thing from scary. I MISS YOU JOEY!
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This is absurd. Nobody that watches a horror film containing monsters is associating them with disabled people. This really is overreaching. Most of these "monsters" aren't supposed to depict disabled people's bodies nor do they encourage inaccessibility, they're supposed to depict the uncanny, the frightening, the impossible like corpse, zombies, vampires, the paranormal. I'm certain nobody is looking at Christopher and thinking xe looks like a zombie spirit. In any case it's HORROR, it's not supposed to be wholesome. If it triggers you ,JUST DONT WATCH IT. is the director supposed to consult with the 8 billion people on the planet and learn what offends them before putting anything in his movie?
Blows my F*****G mind what some folks are triggered by...
Load More Replies... While I simpatize and can see where he is coming from, this post alone proves that his assumptions are an overreach. Looking at these pictures alone doesn't cause fear (maybe the blister one causes a little disgust). What causes fear and what turns someone into a villain is the plot. We are afraid of a shark that remains mostly unseen because of a song. None fears these characters alone. He should redirect his energy elsewhere in my opinion
The actor who plays these characters has the same condition. He seems just fine with it. Everyone needs to relax and realize the world cannot coddle you.
I'm pretty sure Joey Ramone had Marfan's too. He also had a parasitic twin surgically removed from his back. Both I would think could be in horror movies, however he was just so wonderfully talented and the furthest thing from scary. I MISS YOU JOEY!
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