Chained for Life Defaces Traditional Depictions of Disfigurement 


The gaze that accompanies our standards of beauty gets turned right back around and then refracted in Aaron Schimberg’s astonishing Chained for Life, which premiered Sunday at Brooklyn’s BAMcinemaFest. The film takes place on the set of an exploitation movie whose cast is largely disabled or disfigured and portrayed as terrifying. A young actor portrayed by Jess Weixler (Teeth) is hired also for her face, to play the beautiful (and blind) Mabel. Inspired by the traditional, exploitative, and routinely hostile depiction of disability and disfigurement in films like Freaks and named after a 1952 exploitation flick about conjoined twins, Chained for Life extends the decency of inner lives to its cast—its emotional high point comes when the typically bodied cast and crew go home for the night and the disabled/disfigured cast turn the cameras on themselves to direct their own movies imbued with their senses of self and aspirations. All along, Chained for Life offers no easy answers about the innateness of beauty or the insidious nature of exploitation—it asks questions, it provokes thought, it portrays portrayal in a radically new way.

On Friday at the Jezebel office, I spoke with writer/director Schimberg and Chained stars Jess Weixler and Adam Pearson. You may know Pearson from his role in Under the Skin or perhaps his advocacy work on disfigurement stigma (I highly recommend his 2015 BBC Three special The Ugly Face of Disability Hate Crime). Pearson has neurofibromatosis, which causes noncancerous tumors to grow on nerve tissue. He and his fellow subjects had a lot to say about the concept of beauty, portrayal of disfigurement/disability, and being cast as a result of one’s face. Schimberg also told me that he’s having a hard time getting this movie seen. “Disability still makes people uncomfortable,” he told me. “I don’t know if this movie totally placates.” An edited and condensed transcript of our conversation is below.

JEZEBEL: What led to the conception of this movie?

AARON SCHIMBERG: It’s a personal film to me. All my work is filtered through the lens of disability and disfigurement. I’m a filmmaker but in general, but I’ve had to reconcile myself to the fact that films tend to view disability and disfigurement in a negative way. I’ve had to wonder is that a reflection of some sort of inherent human impulse or is it learned behavior, and if it is learned behavior, is film actually contributing to that? Is it contributing to negative stereotypes? I wanted to examine why that is, why films that I in some cases love might have a negative view of me.

Adam, do you have an opinion on the questions Aaron just asked in terms of what film has done to the perception of disfigurement?

ADAM PEARSON: I don’t think anyone is hardwired to be prejudiced against disfigurement or disability or any other minority, for that matter. I think that’s nurture as opposed to nature, but I think film and the wider media in general does disability and disfigurement a huge disservice. It plays to certain tropes. It’s almost a shorthand for villainy, if you look at things like Marvel, D.C., or Bond. In things like Wonder, it’s a shorthand for tragedy or triumph over adversity. It puts disability and disfigurement and people into two camps: they either want to kill the Bat and watch Gotham burn or they sit at home all day listening to R.E.M. “Everybody Hurts” all day on a loop whilst hugging a dog and crying. Those preconceptions feed into people’s subconscious and it affects how individuals view the subject matter and how they treat individuals with those conditions.

When you read this script, what did you think of it vis a vis the camps you just described?

Pearson: I loved this script. I get a lot of offers for films and normally the roles are very lazily written and play into tropes so directly with no context. This was very interesting because I think to ignore it is as equally as much of a disservice as playing to tropes. I think in order to challenge prejudice and discuss it, you need to establish it exists in a way that isn’t on the nose or preachy, that lets an audience almost get their on their own. That’s what makes Aaron a very good director. He doesn’t want to hold people’s hands or beat people over the head. I like the script because it holds a mirror up to the audience and invites a conversation. You need to give people the chance to get it wrong so you can lovingly and gracefully steer them in the right direction.

You need to give people the chance to get it wrong so you can lovingly and gracefully steer them in the right direction.

Jess, what did you make of the script?

JESS WEIXLER: This topic is different than talking about women’s issues or ethnic diversity because those comprise such large groups of people that can band together. My father is disabled and a lot of his friends were disabled growing up. It’s something I’ve noticed people aren’t all that comfortable talking about because every case is so specific. I loved that this film lays it all out there, makes enough jokes or comments about interacting about someone who is “other,” but doesn’t make it so obvious. There’s no obvious bully in it.

Schimberg: A lot of films about disability have a bully, which allows the audience to empathize with whoever’s being bullied. Everyone knows that being bullied is socially unacceptable. I tried to avoid that in the film so that you couldn’t really point to any particular act of discrimination that was going on. I think politically correct society is good on many levels but it also can make discrimination more subtle and insidious. People know what they can’t say and they would judge people not necessarily for discrimination but because they know they’re doing something that is socially unacceptable.

And that’s merely an aesthetic fix, right?

Schimberg: Exactly.

Weixler: We went to a town in Pennsylvania and half of our cast was disfigured or disabled in some way. We would be out in public and you would notice people in this town noticing us as a group. People were like, “What the hell is going on?” People were stunned and would stare at one actor who’s a giant. You could just feel the people around us adjusting to talking to me then talking to Adam then talking to any of the other people.

Schimberg: That’s one of the reasons I set the film on a film set. I knew if we ventured out in public, what I would have to deal with was stares and the reactions of everybody. And then that gets into the audience starting to empathizing with the disabled characters. If Mabel and Rosenthal met in public, there’d be so many questions about why are they together and what do people think? We bypass all of that on the film, everyone understands that they’re costars.

Adam, can you tell me how the experience Jess described of venturing into town was for you? Do you ever get used to being stared at?

Pearson: To say you get used to being stared at is a tad bit blunt, but you develop coping strategies and realize that not all of it is outright discrimination or dickish behavior. There is a certain amount of curiosity that surrounds difference. I’m fine with that. The quicker you can deal with curiosity, the quicker you can stop it from becoming prejudice. And I’m a people person anyway, I’m quite confident, quite chatty. The quickest way to normalize disability for me is to be a guy with a disability that just does normal things.

When I meet someone for the first time, I have to do 90 percent of the legwork in the conversation ‘cause I know I’ve got like 8 seconds to deal with this awkwardness or it’s gonna be a real slog.

Aaron, could you talk about your own disfigurement/disability explicitly?

Schimberg: I was born with a bilateral cleft palate, essentially a hole in my face. It’s been a process of getting to where I am today. I’ve had over 50 surgeries, starting from when I was an infant. My teeth are fake. I don’t really like to talk about it. I know that on the continuum of disfigurement, my disfigurement is somewhat common, one in 700, and not even that extreme. But it’s funny because I think I’ve handed it a lot less well than Adam has. I’m not comfortable. I’m still extremely self-conscious about it. I don’t like being stared at. Our experiences are obviously very different. That’s the thing about disabled people as a group, everyone’s experiences are different. A lot of people might look and say, “You have a cleft palate, what right do you have to make this movie?” All I can say is I know what I’ve experienced. I’m not speaking for anybody else, but I do know that this movie is my honest reaction to the way I feel people like me are viewed in society and have been represented in films.

Something I admire about this movie is that it’s constantly questioning, even itself at times, regarding what constitutes exploitation.

Schimberg: It’s not my place to offer answers and I don’t have any answers. The basic question that I ask myself is: Was being born this way all bad? Has it been good in some ways? Is it as inherently bad as I’ve been made to believe? I do think the film has a point of view. I have a point of view about these issues, but it doesn’t mean that I have any hard answers.

Jess, what did you think of the movie’s interrogation of traditional beauty standards? Had you thought about that sort of thing before you were cast in this role in which you basically symbolize traditional beauty?

Weixler: I was more surprised at what I went through filming this movie than I thought I would be, having been around my father. I realized the most powerful first impression you get is visual. And then everybody’s just dealing with their own shit, with what they’re perceiving and how comfortable they are. I reached a phase with Adam where I felt so comfortable with him. To me it’s all about understanding what makes you feel open and how long it gets to know somebody enough that you’re open with them. The characters in this movie get right up to being true friends and then they part and she’s probably going to keep living her pretty-person life with a shadow of an experience inside of her. But it’s not like she’s going to go to conventions and talk to people about it. I think when most people go through something, they basically keep being the person they were before.

Do you relate to that? Or did doing this movie change you more than it changed your character?

Weixler: When you’re on camera, you’re aware of like, “Oh god, is this lighting making me look old? People are going to look at me…” And you want to look good. To be in this situation and have those thoughts go through my head, I was like, “I feel crazy that a thought just went through my head like, ‘Do I look old right now?’” Because you age out, but I’m like this is ridiculous in comparison to the issue of being worried about people not liking you because of the way you look. At least while I was doing it, it just changed the way I’m thinking. Now I can say that I’m back to if someone’s taking a picture, I try to look good in it. Then I feel weird for trying to look good in a picture because it doesn’t really matter at the core of anything. These selfies, Instagrams, these are not important to me the way, say, people in my life are. But it’s stuff that crosses our minds quite a bit.

Adam, do you have the self-consciousness issues Jess just talked about? Do you wonder, “Am I going to look good on camera?”

Pearson: I don’t. I always look good on camera. [Laughter] No I know I’m there for a role and that somewhat ironically I’ve also been cast because of how I look. And if I didn’t look how I do, I wouldn’t have been in Under the Skin, I wouldn’t have been in this, I wouldn’t have done the documentaries I have. It’s beyond the point of being a blessing in disguise; it’s made me who I am. I think if I didn’t look how I did, I would be a shell of the man that I am. I don’t know what I’d be doing, I’d probably be some advertising asshole making women feel more insecure than they already do. So I’m here at the other end. I think we’ve done the idea of beauty and aesthetics a real disservice by attempting to quantify it. We’re in this ridiculous culture where we’re paying vast amounts of money to consume media that make us feel really bad.

It’s beyond the point of being a blessing in disguise; it’s made me who I am. I think if I didn’t look how I did, I would be a shell of the man that I am.

Do you think our investment in beauty is learned or innate?

Pearson: I think there is something innate there. Psychologically, we’re drawn to symmetry. So when someone like myself enters the fray, who just takes that, tears it up, and throws it out the window, there is a barrier there. When I meet someone for the first time, I have to do 90 percent of the legwork in the conversation ‘cause I know I’ve got like 8 seconds to deal with this awkwardness or it’s gonna be a real slog.

What does the concept of beauty mean to you? Do you feel beautiful?

Pearson: Absolutely. As humans, the most beautiful thing we can do is leave this world a better place than the one in which we were brought up. Chiseled jaws, defined abs, big penis, big boobs—ultimately that all amounts to nothing. You can be a shit human and a pretty corpse.

You can be a shit human and a pretty corpse.

Aaron, you mentioned [earlier] that getting this film shown has been a struggle. Can you talk about that?

Schimberg: It’s been hard. I finished this film at least half a year ago and people have struggled with it. I have gotten the sense, maybe not from festivals but from certain sales agents, that they think people don’t want to look at these faces. People don’t want to see this. There’s been that insinuation. I also think that people don’t know how to talk about it in a way because disability still makes people uncomfortable, I don’t know if this movie totally placates. I don’t think they know how to present it and use the necessary language because we don’t talk about these things.

I think as a society, we’re not really trying to accept disability, we’re trying to correct it and eradicate it. I think even some people on the left would say, “Why should people have to suffer?” But it isn’t always suffering. It’s like Adam said, this has made him who he is. Perhaps it has improved his life or my life. That’s really what the question of the film is: Is it really anything to be fixed? Where do you draw the line? Certain kinds of chronic pain? Even things like that, everybody is going to have to deal with pain. It’s part of the human condition. I really do feel like a lot of it is discrimination.

Chained for Life will encore at the BAMcinemafest on Sunday, July 1.

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