Yes, We’re Here: An Interview on Chained for Life


Chained for Life

Coming in early 2019 will be M. Night Shyamalan’s threequel to Unbreakable and Split, the hotly anticipated Glass. While I’m a sucker for the first film’s main conceit of the extraordinary in an all too normal world, it was Split that made me feel sour on M. Night’s attempt at adding depth and dimension to superhero lore. While technically a good movie, it follows many an unfortunate trope and stereotype regarding real disabilities and rarely delivers on its message of strength being found amongst trauma. If anything, Split does more harm than good, because, despite its fantastical elements, the movie and its makers are stuck in pre-ADA (Americans with Disabilities Act) thinking.

It appears that Glass will be a return of sorts to the super mythology focus of its original outing, but shifting our attention from one theme to another doesn’t erase mistakes or make for a good excuse. Civil rights have helped push access forward for people with disabilities, but when it comes to storytelling and its storytellers when it comes to well-rounded representation that isn’t mega-melodramatic or “inspirational,” we’re still way behind. In continuing these narratives that promote “poor them,” and “ain’t it funny?” feelings and thoughts, a cycle of ignorance and insults become the standard. A world of ableism.

Last month, the New Orleans Film Festival highlighted Chained for Life, an independent feature about filmmaking that turns the ableist and faux-progressive notions and acts upside down. After reviewing the movie, I was inspired to contact the filmmaker Aaron Schimberg and lead actor Adam Pearson, to see what they had to say about their film, their experiences, the industry, and how much farther we need to go. I also reached out to activist/media maker Alice Wong of the Disability Visibility Project to join in on this Q&A session.

Should you and yours wish to attend Glass in a few months, feel free to drop me a line, especially if I’m seated nearby. I’m rooting for something better this time around, and look forward to everyone’s thoughts after having read the following:

Bill Arceneaux: Personally speaking, I had an unfortunate soft spot for Tod Browning’s Freaks, up until I watched The Wolf of Wall Street when the coked out schemers started chanting “One of us!” in a mocking manner amongst themselves. This small moment filled me with shame, as I recognized just how vile the story in Browning’s “classic” was/is. It appears that awareness and revelation can come from the smallest of details and observations. How can stories and performances be crafted for mass audiences to identify and understand humanity with nuance and absent of caricature?

Alice Wong: Films that show versus tell with observational details can make a big impact on how a story is told. For example, in Chained for Life the way the actor Max (Stephen Plunkett) talks over the person playing Rosenthal (Adam Pearson), dominating the conversation and handling his camera, communicates a lot about social attitudes and Rosenthal’s responses and silence during these scenes speak volumes. I don’t think we give audiences enough credit for capacity to accept new and engaging stories. There are ways to layer messages giving viewers opportunities to find something that resonates with them whether they can identify personally or not.

Aaron Schimberg: I think if we want to challenge these perceptions, we need more films made by people with first-hand experience. Freaks is a remarkable movie in many ways, but it is clearly made by someone who is an outsider to the experience of disfigurement, and to me, the film feels, at its core, exploitative – paternalistic at best. It hits every negative stereotype in the book. It also argues in the strongest possible terms that disabled people do not belong with able-bodied people. Furthermore, it suggests, in its final act of vengeance, that disfiguring someone is worse than killing them – that disfigurement is a fate worse than death.

Some people argue that the film humanizes people with disabilities, but who doesn’t understand inherently that disabled people are fully human? Actually – I sometimes think that most able-bodied people see disfigured people as fundamentally different from themselves – that is, subhuman – or am I just paranoid? It’s hard to feel otherwise when you see the way people embrace Freaks as a kind of progressive work. I find it disconcerting that so many people defend it as a positive portrayal, and aren’t able to recognize the way it’s robbing the disabled actors of their dignity, making such a fuss about how human they are while consistently dehumanizing them. But this, in fact, closely mirrors the conventions of the freak show, which is, after all, where Browning learned his trade.

Adam Pearson: When it comes to the portrayal of minority, group cinema has a huge task at his hands, particularly when it comes to the arena of disability and disfigurement. The ability to create characters who carry a degree of authenticity, who possess a degree of nuance that tackles the issues directly but also steers clear of caricaturing has been something that Hollywood has historically struggled with and even to this day appears to be the one area where failure, mockery, and mythos still appear to be the orders of the day.

BA: Hollywood has made some strides in representation of people with disabilities, but are still stuck in an old box of stereotypes and casting. Chained for Life follows an independent film crew that may be operating outside of the system, but still discriminates and exploits in various ways. Is it up to the mainstream to set the standard, or must change come from smaller sets? Does it matter from where or how we achieve this?

AW: It takes all approaches and efforts from all systems. Mainstream film and TV shows are incredibly influential, and they set the default on which stories and audiences matter. This is tied to advertising and capitalism, of course. Changes within the system can reach more people yet changes outside the system, from filmmakers and creators who are more innovative and risk-taking out of necessity, can accelerate the pushing of boundaries that need to be broken. As long as people do something to change the status quo it doesn’t matter where they are located within the industry.

AS: Cinematic representation is certainly a way to start challenging negative perceptions – which cinema has helped perpetuate. But, on the other hand, cinema’s tendency to rely on visual signifiers and emotional manipulation, and the way it encourages believing in appearances, has warped and simplified the way we view just about everybody and everything. It’s not a form that often encourages nuance and empathy. Even concepts like “good,” and “evil,” are useful in narrative terms but less helpful in assessing how we perceive others in the real world.

Hollywood likely will not change unless there is financial incentive to do so, which I find hard to imagine. There are a few films about deaf culture that have come out, and I’m convinced that it’s because dialogue-free films are a financial asset in a global multilingual market. But Hollywood being a progressive voice for disability – I mean, Wonder just came out this year, and that movie is a step backward from Freaks, in my opinion. But I haven’t found a lot of great independent films about disability either. But presumably you’ll find more diverse and subversive voices in independent film, and I guess the best one can hope for is that, as always, Hollywood eventually co-opts these voices.

AP: In 2017 Meryl Streep slammed President Donald Trump for mocking disabled journalist Serge Kovaleski, and whilst I am no fan of President Trump and found these actions of the utmost distaste, I am equally forced to ask – what favors has Hollywood done the disabled community? By portraying us as freaks in Tod Browning’s film of the same name. Or by portraying us as villains in Marvel, DC, Bond and Disney films across the board. Perhaps, however, you are more familiar with the characterization of disability as a shrine for victimhood with films like Wonder and Me Before You both exceeding their box office expectations. This is, thus far, the legacy Hollywood has left in its handling of disability in an on-screen capacity.

This damage is further compounded when you examine the fashionable trend of able-bodied actors “cripping up” – playing disabled characters in a desperate bid to attain their “Oscar moment.” In fact, since the Oscars started in 1929 16% of best actor/actress awards have been given for such portrayals. Whether they were successful – Jamie Foxx in Ray, Eddie Redmayne in The Theory of Everything, Tom Hanks in Forrest Gump, Daniel Day-Lewis in My Left Foot, Al Pacino in Scent of a Woman, Leonardo Dicaprio in What’s Eating Gilbert Grape, Jodie Foster in Nell, and the list goes on. Also, the least said about Gary Oldman in Tiptoes the better (this didn’t win!).

This puts us in a situation where we have nondisabled writers creating roles that are given to nondisabled actors and as a result, we wind up getting really well-meaning yet misconceived ideas of what disability is. In fact, in the history of the Oscars, there have only been two disabled actors who have received the prestigious award; them being Harold Russell in 1947 and Marlee Matlin in 1987.

Chained for Life 3

AP: Now, don’t mishear me, I understand the endeavor of acting, I am an actor after all. What I question is, in an industry that loves stories about disability, where are all the disabled actors? Of course not every disabled role should go to a disabled actor, that’s equally unhelpful and bigoted. However, I believe it is greatly significant that Hollywood, along with the cinema-going public, acknowledge that there is a HUGE issue with representation both on- and off-screen and until that this is resolved I fear that disability will remain the final taboo in western popular culture. In 1965, Laurence Olivier played Othello and by all accounts nailed it. In 1985, John Hurt played Joseph Merrick – The Elephant Man and again nailed it. However, does this type of casting have a place in 2018? There is a definite imbalance that needs addressing and conversations that need to be had.

That being said I am never a big fan of censoring words or lightening content for fear of “triggering” an audience. Words are one of the few civil liberties we share as humans and when we start to remove them it causes damage on multiple fronts. The title of the movie Freaks, to some, may be considered slightly archaic, and frankly, that’s because it is. The film is from 1932. Art is designed to exist in the vacuum of time, and whether its Keira Knightley holding the Disney films of the 50’s up to the lens of 2018 feminism (though conveniently overlooking her role in Love, Actually), these reactions end up putting down a lot of eggshells and ultimately stifle what are very important conversations.  Therefore, everyone ends up in an overly PC discourse whereby people, afraid of offending someone, talk around the issues, rather than having an open and honest conversation. It is these conversations, that if allowed to occur and flourish, can lead to the betterment of the film industry. Therefore, I believe we all need to get over ourselves and learn to delineate between hate speech and speech we consider hateful.

BA: What does the title of the movie mean for you? Are we destined to a cycle of ableism or can these chains, put on us by outside and inner forces, be broken for good?  

AW: Chained for Life is a delicious, pulpy, campy, noir-ish title. I love how melodramatic it sounds; like Magnificent Obsession. I think of the trope that disability is a tragic burden with titles like this film. Ableism is a chain that we are all complicit in creating and upholding. Not sure if ableism is going away anytime soon, but the first step for most people is to learn how to identify it (that is, call it for what it is) and understand it as a systemic form of oppression. Popular culture can play a major role in helping people ‘see’ ableism at work in stories about and by disabled people.

AS: I always had this title in mind for the film. I stole it from a horrendous film from 1952 about the Hilton sisters, the conjoined twins who were in Freaks, but the title really resonated with me – it can be read as mawkish and lurid, or as an earnest lament. The original Chained for Life is a sort of unofficial companion to Freaks, and my film is too, so I wanted to make that connection explicit. Can these chains be broken? I don’t know. But the chains in the title don’t necessarily refer to disability, or to the disabled characters.

BA: Chained for Life may be a heightened and playful reality, but it all feels very true. I especially loved how, despite and in spite of their backhanded treatment at the hands of other characters, the disabled cast are shown with personality, individuality, and humor. It made me think about how a bigger production would depict them – being misfit like and plucky, by virtue of their “flaws” first and foremost, humanity second. How far does media representation and expression go in shaping hearts and minds? Why must ignorance be passed down from one era of media to another?

AW: People are much more open now, demanding and critiquing media and how a lack of representation impacted their sense of self. Whether we like it or not, popular culture shapes our sense of the ideal and ‘normal.’ Culture change is slow and it takes time because those who are in the establishment like their power and don’t want to give it up. Ignorance is no excuse for continually excluding marginalized communities.

AS: One of the questions the film asks is, to what extent has cinema shaped society’s perceptions of disability and disfigurement, and are these cinematic portrayals reiterations of age-old mythologies, or some objective truth that I don’t want to admit? Is the fear of disfigurement an innate impulse? Are symmetrical faces objectively more beautiful than asymmetrical ones? Can there truly be an objective standard of beauty? Or has cinema actively, perhaps purposefully, contributed to the marginalization of disfigured people? After all, movies have always favored certain kinds of faces – not to mention races – and defined, and continually re-define, standards of beauty, and this doesn’t necessarily reflect intrinsic human inclinations, but rather the tastes and desires of a small subset of the population. I wanted to explore – maybe confront – this cinematic legacy directly, but I don’t think it’s possible for me to answer these questions definitively.

Chained for Life is, first and foremost, a personal work. I speak only for myself – my own experiences, my feelings about having a cleft palate, about others’ perceptions of me, about the way I’ve seen disfigurement represented – and a lot of these feelings are complicated or unresolved. So the film reflects these contradictions, and it’s likely to seem ambiguous or unsatisfying if you’re viewing the film primarily as a work of activism or didacticism. I can’t take it on myself to speak for a whole community – especially such a multifarious community – or for any person but myself.

But I am, of course, very conscious that disability is poorly represented in film, that the subject makes people uncomfortable, that people have negative perceptions of disfigurement, that disabled people are mistreated – and these issues are relevant to me and things I grapple with, so by default the film is a battle-cry, a provocation. But all I’m capable of doing is adding my voice to the conversation – if the result can affect a viewer’s deeply-held attitudes or behaviors, or change hearts and minds as you say, great, but that’s a lot to ask of any movie. It’s not my fault disability is underrepresented, and far be it from me to make a definitive work on the subject. All I can say is, this film speaks for me in a way no other film has – but that should come as no surprise.


AP: I think ignorance is passed down from one form of media to another and one generation to another because, as I said earlier, there is a systemic problem with representation in the film industry. If we consider the fact that 16% of Oscars have been won based on portrayals of disability, yet only two of those Oscars have been awarded to disabled actors, it is woefully obvious that Hollywood loves stories ABOUT disability but appears to be significantly less keen on disabled people.

BA: What has your experience in traversing the landscape of acting been like, and how did it inform your performance in the film?

AP: As a disabled actor you are always acutely aware that able-bodied actors are, more often than not, telling the stories that you feel you should be. As a result, getting a decent and meaty role is a very scarce commodity indeed. Even the roles that do come up often fall into negative stereotypes that serve to merely propagate a false ideology about how disabled behave in everyday life. As a result, I end up turning down a lot more roles that I take. People probably think I’m difficult to work with or hard to please, though the reality is if we had more disabled writers who were given the chance to write accurate stories for disabled actors to tell, it’d make my life a great deal easier and would also benefit the industry as a whole.

BA: When introduced to Rosenthal, we see cast and crew members come up to him, making very strong efforts to not be offensive in any way. But when another actor approaches him for a photo, things turn awkward fast. It’s like walking on eggshells carefully but causing more noise than normal. The lead actress Mabel, however, has a moment with him when, after not making eye contact in conversation for several minutes, she finally does so, and seems to let her guard down some. What are your thoughts on the meaning of these sequences, attitudes, and interactions?

AP: I think both myself and Aaron come from an incredibly similar place, both having grown up with facial disfigurements, we are all too aware of how the real world interactions work. The challenge came from attempting to capture the subtlety of these interactions, be it curiosity, pity, fear, friendship, or vitriol and translate that into the narrative of the film. Fortunately, we all had enough trust and freedom to be able to play with those emotions. It also helped that myself, Jess, and Aaron had cultivated a relationship that would allow this kind of creativity to flourish.  I wanted to keep things as true to life as possible without losing the charm that runs through the film as a whole.

BA: As a direct challenge to and criticism of modern ableist representation, how does Chained for Life rate for you? If you could recommend other films of this ilk, what would they be and why?

AW: I enjoyed Chained for Life; it’s a film that keeps you guessing and makes you feel unsettled. First, it mocks the pretentiousness of filmmaking and acting as the viewer floats in and out of various conversations during the making of the film-within-the-film that’s very Truffaut-esque. Second, the audience is forced to interrogate the ableist gaze as we watch how the non-disabled characters treat the disabled characters and how they are portrayed through the camera for shock value. Third, I guffawed a lot watching Chained for Life, as it touched on a smorgasbord of contrived and tiresome stereotypes about disability: the blind person touching faces, disabled people as an aberration or a defect needing to be fixed, disfigurement as metaphor for evil or moral turpitude, living in the shadows until a savior character brings a disabled person into the ‘light,’ and the allusion to Beauty and the Beast (i.e., who could love a disabled person). Two recent movies I enjoyed that had excellent disabled and deaf representation: Finding Dory and A Quiet Place.

BA: What can moviegoers and television viewers do to challenge the awful status quo? Are there organizations that deal with inclusion they can support?

AW: People who want to support disability representation in film and television can do a number of things. They can educate themselves about inspiration porn and the harm of non-disabled actors consistently cast in disabled roles (aka cripping up). They can read and follow disabled writers and film critics such as Kristen Lopez and Angelo Muredda. They can buy tickets and effusively share media they like featuring disabled actors and filmmakers. They can attend events such as Superfest International Disability Film Festival and ReelAbilities Film Festival. They can discover artists who are producing content on YouTube such as Shannon DeVido’s Staring at Shannon or contests such as the Easterseals Disability Film Challenge. There is so much amazing talent out there.


Bill Arceneaux has been an independent writer and film critic in the New Orleans area since 2011, working with outlets like Film Threat, DIG Baton Rouge, Crosstown Conversations, and Occupy. He is a member of the Southeastern Film Critics Association and is Rotten Tomatoes approved. Be sure to check out his film reviews and other articles here.

Share this Article

Leave a Reply

Your email address will not be published. Required fields are marked *