June 2021. I’m performing at Matrix Theatre’s Solo Performance Festival in Mexicantown on Detroit’s West Side. While I kneel on a dimly-lit stage with a projector screen behind me, the audience finds wadded-up papers with tiny pebbles inside scattered among the seats. Each paper has a word that has, in the past, been used to describe my lopsided back:
Hunchback
Quasimodo
Crooked
Twisted
And my personality:
Venomous
Villain
Per their instructions, the audience uncrumples the papers, reads them aloud and then rewads them around the stones and chucks them at me. With each hit, I bend over and to the side, hunching in on myself, spine contorting against hardware. As each slur is spoken, I write it on my skin. Behind me, the projection screen cycles through years’ worth of x-rays, my spine progressively contorting, right up until the last one before I had it surgically yanked back into place and secured with eight flexible ropes. The final preoperative x-ray on the screen measured my curve at 90 degrees.
The words scribbled on my body came from a variety of sources: parents, lovers, bad bosses. They referenced both my physical deformity and aspects of my personality that are apparently viewed negatively. Whether this negative view of my personal traits was more amplified by my status as an assigned female at birth, femme-presenting person, or the fact that certain things about my appearance are slightly off, who knows. But God forbid you be anything but grateful, sweet and cooperative. Especially if you’re a woman. Especially if you’re anything other than conventionally beautiful.
I can still remember the first time I saw it in sixth grade. It was early morning, and I was lined up outside of a yearbook class in a hallway across from a large window. I could see my reflection against the dark sky outside — and I noticed a certain roundness to my back. My right ribs curved straight behind me like the first letter of my name: a C. I started bending, contorting, trying to see if there was a way to suck the back ribs in somehow, but there was no use. There was a giant hump on my back, and there was nothing I could do about it.
I was diagnosed with mild scoliosis at 6 years old. After a failed and traumatic experience with bracing, my spine hit surgical range, 50 degrees, before I turned 12. Even though the curve in my back was painful and the deformity was taking a toll on me mentally, I opted out of a spinal fusion in the interest of maintaining mobility. So my curve and hump progressed throughout my teens before I was ultimately able to undergo a newer, motion-sparing procedure in my 20s. While the surgery did significantly reduce my curve, it did not eliminate the “rib prominence” I so hated. Even today, two years post-op, I still have a bit of a hunchback — reduced, sometimes hidden with good posture, but never gone.
In the years that I’ve lived with my lopsided ribs, I’ve experienced various feelings about my body in phases. I’ve always been self-conscious and vaguely disgusted by the way my back looks. But, in some moments, I’ve been able to summon up a degree of pride. Three years into my forced cohabitation with crookedness, I started doing theatre, and I haven’t stopped since. Most of the time, people either didn’t notice or lied about not noticing. I can remember one time after a show when my co-star’s sister came up to me and touched my back, asking, “Were you born with this?”
She went on to say, “It just makes you more beautiful.”
I have a lot of mixed feelings about that.
In an experience perhaps shared by many femme people, I’ve always felt a certain pressure to be beautiful. If I’m not devastated about the aspects of myself that are not conventionally beautiful, it’s as though I’m not doing my job as a woman somehow. So what kind of a woman am I if my back is lopsided and noticeably hunchbacked on one side? If my left ribs poke forward in the front, making my boobs ever so slightly asymmetrical? If my spine is always pushing one shoulder higher than the other and makes my head want to tilt to one side?
Add in a fiery, decidedly not sweet and meek personality, and we have a recipe for an experimental piece of theatre involving insults and ableist slurs written in Sharpie on bare skin and a sanitized stoning.
Since my deformity is behind me — literally, not figuratively — it’s hard to say whether it’s played a role in the various terms hurled at me over the years. If I’m looking somebody in the eye to call out some nonsense, my sharp tongue is much more visible to them than my ugly back. While insults directed at my personality were almost always said in anger, those uttered about my appearance have typically been in jest — supposedly, anyway. But part of me always wonders.
Outside the realm of experimental theatre, depictions of bodies like mine are limited. I can’t recall ever having seen a movie with a leading lady who has scoliosis, and certainly not one where she’s also a fully realized, three-dimensional person. The hunchbacked characters I can think of include Quasimodo, perhaps a decent guy but largely shunned by his community. There’s Rigoletto, an operatic jester who is technically the story’s hero, but also manages to get his daughter killed. There’s also Pulcinella, a hot-headed, 16th-century Commedia Dell’arte character with a hook-nosed mask, a penchant for crude humor and fights and an oddly placed poetic side. According to John Rudlin, he even sometimes had two humps “indicating his split personality.”
Then, there are characters like Venable.
“American Horror Story: Apocalypse” brought us a group of characters learning how to survive in a nuclear wasteland, some of whom found themselves in an elaborate underground bunker where no one is allowed to have sex (seriously, what else are you supposed to do after the end of the world?). The makeshift community is run by Sarah Paulson’s Venable. A few episodes in, the Antichrist (played by Cody Fern) pays her outpost a visit. To determine whether Venable is worthy of being transferred to his special, better fallout shelter elsewhere, he creepily orders her to undress for a physical examination, revealing vertebrae that are visibly curved to the side — to a familiar eye, indicating scoliosis — and … purple skin?
Wha … ?
Her back was bruised and veiny, literally tinted in varying shades of purple.
Okay. So there is clearly a lot wrong with this image anatomically.
First, scoliosis is rotational, and the deformity comes from this rotation more so than the sideways curve. The spine doesn’t just curve to the side, it twists, which is what pushes the ribs out on one side and causes them to cave in on the other. So Venable’s back should have been a lot more lopsided than bony and veiny.
Second, and I want to make this very clear: SCOLIOSIS DOES NOT TURN YOU PURPLE.
I don’t know what poor, mean old Venable had. Maybe she had blood poisoning. Maybe she was pregnant with a Xenomorph. But that was not any case of scoliosis I, and I doubt any licensed practitioner, have ever seen.
To the showrunners at “American Horror Story”: If you’re going to put a prosthetic spinal deformity on an actor with a pristine spine, at least run a basic Google search first.
The prohibition on carnal relations in the fallout shelter is revealed to be fabricated by Venable; it was never an actual rule. Nonetheless, the handful of outpost residents she is “saving” must live out the rest of their lives underground in a nuclear wasteland with nothing to fill the time, lest they be thrown out to die of radiation poisoning.
Okay. Let’s pick this apart.
Yes, Venable is mean. Perhaps feeling constantly ashamed and othered can make people mean. But this is just the latest chapter in a long history of painting deformed people as villains. What does Venable’s scoliosis have to do with anything? It seems like the showrunners were trying to portray her as someone who grew bitter because she felt like an outcast, and if I’m right about that, then why couldn’t she just be run of the mill ugly or bullied for being shy or poor? There are a million and one ways to feel different. Hell, they could have made up an illness. Why give somebody something that is so obviously a symptom of a known (and common) medical condition, and then not even portray it accurately?
Thinking about Venable’s portrayal makes me want to both laugh and write some screenwriter a piece of hate mail. But, on some levels, how can I blame them? Imagery and stories combining visible physical differences and evilness are everywhere. This is not a new phenomenon. Just ask Shakespeare.
The Globe, a Shakespearean theater in London, recently came under fire for casting an able-bodied, presumably straight-spined actor as King Richard III. In a world where most actors are able-bodied and straight-spined, why should this be a big deal?
Because our pal Richard was, according to Shakespeare:
“…deformed, unfinish’d…”
“…a poisonous bunch-back’d toad…”
“To make an envious mountain on my back,
Where sits deformity to mock my body…”
“…scarce half made up…”
In other words, Richard III was a hunchback. Richard’s skeleton was found and exhumed in 2013, and a computer reconstruction confirmed his spinal deformity. He had a curve measuring between 70 and 90 degrees.
Some might wonder what that feels like. I don’t. I found a virtual model of his spine online and counted the vertebrae. He has almost the same spine that I did preoperation.
Regardless, it begs the question: Why does Richard need a deformed personality to match his twisted body, or vice versa?
When we look at depictions of monstrosity — think monsters and demons — we often see physical differences. We might see demons with protruding bones, collapsed cheeks or contorted, clawed hands. Or monsters with animalistic features, like humanoid salamander creatures living in bodies of water. In all cases, these creatures are somehow set apart from “the rest of us.” Just like villains can never be the same as us good people.
Or maybe I shouldn’t say “us.”
While there’s still a long way to go, the media we consume has, at least in some ways, become a little bit more inclusive in recent years. Even if it’s still not proportional to the world we live in, we’re seeing more people of Color in leading roles and more Queer actors and characters. There have also been some decently well-rounded characters embodied by disabled actors, like Isaac in “Sex Education.”
But this progress doesn’t seem to include deformities or other physical differences in appearance. Changing Faces UK interviewed about 1,000 people with visible physical differences, and 74% of them believed that, though inclusivity in media is progressing in some areas, physical deformities are still being excluded. That same survey found that only about 20% of people with deformities had seen somebody like them on TV. Only 15% had seen someone with a “visible difference” play a love interest.
And almost 40% had seen someone with a deformity cast as the villain.
There’s a part of me that can’t help but wonder: Does having so many villains with visible differences make people subconsciously view those with deformities as suspect?
When my back is not visible, I look fairly normal. Maybe I don’t draw much attention. But in situations where I know it can’t be hidden — at the beach, or in a sweaty yoga class where I decide to practice in a sports bra — I can’t help but wonder what people think. Do I disgust them? Do they wonder if my lopsided back is somehow my fault? Do they assume things about me, whether or not they’re conscious of these assumptions, based on my appearance? I’d love to say that I know the answer to both of these questions is a resounding no, but I honestly don’t know that. And constantly seeing exaggerated, distorted and inaccurate portrayals of bodies like mine isn’t helping.
I obviously have a whole mess of feelings about this. And it’s hard to make sense of how you feel about your prescribed social narratives when you’re untangling an entire culture’s worth of exclusion and faulty narratives all on your own.
In a recent first for me, I sat down with somebody else who has a body that looks different. When LSA junior Porter Selfridge was about a year-and-a-half old, he visited his grandmother’s house for Christmas. He was crawling on the kitchen counters and spilled scalding coffee on himself, leaving him with permanent scars.
“When you’re super young and when something traumatic happens, your brain just blocks that part out,” Selfridge says. “As far as I’m concerned … I’ve just always had scars.”
We spoke about depictions of bodies like ours in media, and he quickly sounds off on a pop culture fail: “Ready Player One.”
“I remember just watching the movie and (being) like, are you kidding me?”
The movie follows a bunch of characters living their lives through avatars in an elaborate virtual reality. In the movie, a big deal is made of the fact that one of the characters, Art3mis, hides her face in real life because of some major flaw in her appearance. She creates her avatar without the birthmark so that the others won’t know.
“Then they find her in real life and she’s got … basically like a birthmark,” Selfridge said. “Steven Spielberg … was just like I’m just gonna have a girl be a little bit different and then we’re gonna hype her up that she’s deformed.”
So basically, the movie made a big deal out of a small difference. I’ve honestly noticed the opposite trend in depictions of spinal deformities — they’re almost always depicted to the extreme and, as we’ve seen, inaccurately. But I do see his point: If the stories we consume are telling us that small differences are a big, shameful deal, then what narratives are we implanting in those who have “bigger” differences in their appearance?
There’s another key difference in our perspectives: Porter’s scars happened in an accident. They can be traced back to a particular event. My spine curved out of nowhere. It was pure chance, quite possibly hardwired into my DNA before I was even born.
So, even as I was ready to get mad about characters like Harvey Dent (a villain whose origin story involves severe burns to one side of his face), Selfridge points out that burns can be a reminder of a concrete, life-altering event in a way that my spine cannot.
“With your villain origin story, it’s not that you got burned, it’s the things that got you burned,” he said. “For burn victims, they almost kind of work as a narrative device.” So there’s nuance here. Life and art are meant to reflect each other; there’s no way to take deformities completely out of our media, nor do I think we should. So how should we approach visible differences in the arts?
As someone who has written, directed and acted for both theatre and film … that’s a big question.
In some instances, we might say that actors who do not share a character’s identities should not be cast. I would certainly be upset if I were passed over for a character with scoliosis in favor of somebody with a straight spine (looking at you, Globe). Then again, since Hollywood and the performing arts have been extremely appearance oriented for so long, maybe it’s hard to find an actor with a visible difference.
Ultimately, though, what I want to see are real, complicated people.
Selfridge and I both agree that “X-Men” is a far superior portrayal of difference, physical and otherwise.
“One thing that they’ve always been really, really good at is showing a really great diverse group of people that all have something unique going on — and some people are more different physically than others, but they all treated the same”, said Selfridge.
A lot of them are even heroes. Though some can be villains, too, and in this case, I’m okay with that. We see that they can be both or either, just like all people, no matter how they look or what weird talent they have.
Maybe they can even be strong-willed femmes while still being likable, good people.
Personally, I’d also like to shout out “The Grand Budapest Hotel’s” depiction of Agatha. Like Art3mis, she has a mark on her face, but in this case, it simply isn’t a big deal. She plays a crucial role in the story, her birthmark is given only the briefest mention and, at least to me, it seems very clear that her love interest thinks she’s beautiful anyway. (The one small caveat I’ll add is that Agatha was played by Saoirse Ronan, who, to my knowledge, does not actually have any kind of birthmark on her face in real life; so, as with many things, I still have a few mixed feelings.)
As an actor with scoliosis, any character I play is basically going to have scoliosis by default. It can’t really be hidden. And I have a degree of shame in admitting this, but for the most part, I haven’t addressed that in my work. Being a “deformed” actor wasn’t on my list of career aspirations when I first started performing. And granted, not every costume leaves my rib hump so visible, but I’m wondering if this is something that I should change.
If I can be deformed, fiery and a fundamentally good person, then shouldn’t I make it a point to write stories and play roles that show this level of nuance?
It’s not simple. But people are not simple. We are complicated, and honestly, we’re probably all a villain in someone’s story.
There’s a valid argument here that changing narratives shouldn’t solely rest on those harmed by them. That said, if things are not changing, at a certain point somebody has to step up.
Maybe it’s time I wrote an “American Horror Story” parody where the hunchback shelters the apocalypse survivors in a pleasure commune where everyone can have (consensual) sex whenever they want and they take joy in the varied appearances of each other’s bodies.
Maybe my version of Venable can be just a bit more human.
Statement Correspondent Cydney Heed can be reached at cheed@umich.edu.