A Person With Marfan Syndrome On TikTok Wants Horror Movies To Stop Exploiting His Disability
Christopher Ikonomou, a 21-year-old student living in Los Angeles, loves horror movies. In fact, he attended a horror convention just last week. But there is one aspect of the genre that's deeply unsettling to Christopher: the way in which it exploits people with disabilities by using them as inspiration for "monsters" and villains.
Christopher has Marfan syndrome, an inherited disorder that affects connective tissue — aka the fibers that support your organs and other structures in the body. In an interview with BuzzFeed, Christopher said, "The visible symptoms include the trademark body type marfanoid habitus, which includes being 'unusually' tall and thin, having disproportionately long extremities (arms and legs) and digits (fingers and toes), flat feet, and hyper-mobility. The chest may appear indented in what's called pectus excavatum, and many people with Marfan also have scoliosis."
@cpikoart Counting down #MarfanSyndrome symptoms for Marfan Awareness Month! #ChronicIllness #Disabled #KnowTheSigns
♬ CountDown - T.M.T
"On the internal side, the most telltale symptoms are related to the eyes (severe nearsightedness, subluxated lenses, and increased risk of retinal detachment) and heart, [including] aortic aneurysm, which can lead to spontaneous aortic dissection, a tear in the inner layer of the body’s main artery, and prolapsed valves. Since connective tissue is everywhere in the body, Marfan can affect other parts of the body as well, such as causing spontaneous lung collapses or cerebrospinal fluid leaks," Christopher said. Here's a video he made on the aortic root replacement he had this year:
@cpikoart T-2 weeks until aortic root replacement surgery! 🫀 #MarfanSyndrome #ChronicIllness #Disabled #HeartSurgery
♬ Blade Runner 2049 - Synthwave Goose
In a TikTok that now has nearly 1 million views on the platform, Christopher made a dig at horror movies for using people with Marfan syndrome to inspire their monster designs:
@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)
"Something I've noticed in my horror consumption is that a lot of monsters looked like me, and that's why people are terrified. Very few people talk about this aspect of disability representation. Many aren't fans of the genre, so they don't realize it's happening, and some brush it off as unintentional representation that doesn’t have a real impact. So, inspired, I hopped on a popular trend format at the time and called it out," Christopher said about the video.
According to Christopher, examples of horror films that feature monsters with Marfan syndrome–inspired looks include...
Rec:
Mama:
Slender Man:
Sony