What AHS: Freak Show Got Right (And Wrong) About Ectrodactyly

“Passing” is a loaded word for many of us, particularly those of us who live inside darker skin, outside the gender binary, or under the cloak of disability. To “pass” is to move through life undercover. No matter how proud you are of your true self, society is all too happy to pigeonhole you into what it thinks you are—whether you like it or not. The ability to pass automatically classifies you within a representation of “normal” that you were never asked to define, and enrolls you in a club you never asked to join. Sometimes it imbues you with newfound privilege; sometimes it gets you killed. It can be a frustrating and sometimes terribly dangerous line to walk, and when it comes to addressing it, the media has a dreadful track record. Occasionally, they get it right; at best, they strike up a conversation. This past season of American Horror Story: Freak Show, which ended last week, did a bit of both.

Early in the season, the campy horror drama addressed the idea of passing in short, tense scene between Paul the Illustrated Seal and leading man Jimmy Darling. Paul’s frustration with Jimmy’s pigheadedness builds until he snaps, “You know your problem? You can pass. When no one’s pretending, all the bullshit, and the noise, just drops away.” It’s a quick flash of dialogue, a fleeting phrase that most people wouldn’t really register in the midst of the bigger drama unfolding. What it does is draw a sharp point under Jimmy’s hitherto unspoken privilege. Unlike his friends, Jimmy’s able to shed his freak show persona and pass as “normal”—all he needs is that trusty pair of black gloves, and he’s just another handsome Southern fella with an easy grin and a pretty girl on his arm; Ladykiller by day, Lobster Boy by night. He isn’t saddled with the reality of Paul’s thalidomide-stunted limbs, or Bette and Dot’s clumsy conjoinment; he can ditch his freak status at will, so long as no one looks too close.

While the rest of the series saw the golden boy suffer greatly and eventually found peace, try as I might, I just can’t get that line out of my head. When I heard Paul speak those words, it may as well have been trumpeted from the heavens at a billion decibels. Jimmy and I are a lot alike. I can pass, too.

As Jimmy Darling, able-bodied actor Evan Peters dons a pair of prosthetic hands to emulate the fused fingers and knobbly “claw” look associated with both syndactyly and its rarer cousin, ectrodactyly. He hits the mark, in that they look appropriately peculiar for the show’s ends. Freak show history is littered with performers born with the various conditions featured on American Horror Story: Freak Show (including the most famous Lobster Boy of all, Grady Stiles). But even just in terms of Peters’ character, it’s not hard to see why the show has gotten a considerable amount of backlash for its portrayals of characters with disabilities. Echoes of the criticism floating around Eddie Redmayne’s portrayal of a young Stephen Hawking in the early throes of ALS in The Theory of Everything come to mind, but the representation problem that disabled individuals face in Hollywood is can be difficult to debate. The dearth of solid acting roles for LGBT folks or people of color is inexcusable—but when it comes to finding experienced actors living with very specific, very rare conditions, realistically speaking, what’s a casting agent to do? It sure would’ve been nice to see the showrunners give an opportunity to someone who accurately represented the condition, instead of whipping up gross prosthetics.

But in this specific case, it’s hard to deny that there aren’t that many actors with ectrodactyly; hell, there aren’t many people with ectrodactyly. Since no one on AHS’s established ensemble cast was born with the necessary anatomy, allowances were made. I can accept that. The real insult is the extent to which they went to make the prosthetics in question look monstrous. It looks as though Peters’ prosthetics were modeled on Stiles’ claw-like hands, but then elongated, thickened, and exaggerated to grotesque effect.

Yes, of course, it’s a horror series, and of course the characters, particularly those deemed “freaks,” are going to look extreme. But let’s look at this from another perspective. When a person is part of a tiny community—one that sees zero representation of itself in the mainstream media outside of a grotesque caricature or historical oddity—the sight of that caricature can be hard for them to bear. Ectrodactyly is a rare condition, so rare that most people haven’t even heard of it. For better or worse, the character of Jimmy Darling is the most visible person with ectrodactyly since Bree Walker. Many feel it’s for worse; as one woman whose family has a four-generation history of ectrodactyly wrote to me in an email, “I don’t know what to tell my grandchild when he comes home from school crying because the kids all called him a freak; they saw it on TV, and now they tell him he should join a freak show. How can you produce a show that you know will cause more people to ridicule, belittle, demean and bully a person who just happens to have a different set of genetics than you?” She’s part of a private Facebook group for people with ectrodactyly and their family members. The group’s members have sent angry messages to Evan Peters’ Facebook page and several others, though as of press time they have not gotten any response. I fear that they’re screaming into a void, especially now that the series has run its course, but it’s hard not to sympathize with her and the other members of ectrodactyly support groups I’ve come across, and especially with the worried parents of children with ectro.

As much as I understand the hurt and outrage other people in the ectro community felt at the sight of those garish claws, Jimmy Darling is the first television character I’ve ever seen who looks like me. For me, that alone almost makes up for those damn prosthetics. Seeing him for the first time was such a visceral experience that I teared up. Alongside everyone else in the approximately 1 out of 90,000 birth odds who hit this particular genetic lottery, I was born with ectrodactyly (adactylia, to be precise). If I’d been born back when the circus was still doing a roaring trade in freakery, I probably could’ve raked it in as a blonde, blue-eyed Lobster Girl. As it stands, I make my living as a writer—not bad for a gal with eight fingers, huh? Growing up, my family never discussed my condition, and the kids in the tiny town where I was raised got tired of calling me “E.T.” somewhere around the middle of first grade. It stopped being a big deal, and was just a part of me; I like to read, I have a little sister, my left hand is a claw. Whatever. I never thought about it all that much, save for when I copped the occasional burning stare, or that time I had to explain to one of my high school teachers why, no, actually, I can’t take that mandatory typing class. The emotional scars from childhood taunts gradually faded, even as the physical scars from childhood surgeries stick with me. At the end of the day, I have a visible deformity that’s practically invisible if I stuck my hands in my pockets—my version of Jimmy’s gloves.

In terms of disability, I’ve always wondered where I fit in. Am I? Am I not? I’m not so hot at opening jars and doing pull-ups, but can do my own nails and can probably type faster than most people, so it evens out, in a way. Those of us born with fairly minor but noticeable birth defects occupy a strange sort of limbo between the two worlds. People who live with invisible disabilities undoubtedly hear the hated “But you don’t look sick!” line more times than they can stomach; I’m told “But you’re not really disabled!” The difference there is that I’m not sure if they’re right or wrong. I am able to pass on a conditional basis, so where does that leave me? Those are answers I’ll need to suss out on my own, but I’d hazard a guess that I’m not the only one treading water in the am-I-or-aren’t-I zone, and that I’m not the only one who felt just a little bit less alone when Jimmy Darling sauntered into view. And if, like Jimmy, I was given a choice between acquiring “normal” hands and keeping the ones I was born with, I’d stick with what my Mama gave me.

I’ve got a feeling we won’t be seeing someone like him again anytime soon, and honestly, I’m going to miss him.

Kim Kelly is a writer, music journalist, and occasional road dog who has written about music and culture for The Atlantic, Pitchfork, The Guardian, NPR, Spin, Noisey, Wondering Sound, Decibel, and many others. She lives in Brooklyn with an affable Englishman and an imperious cat.