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MOVIES Susan Nussbaum on Hollywood's 'Code of the Freaks'
by Gretchen Rachel Hammond

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It's Oscar-baiting season—the time of year when Hollywood heaves out its best scripts, actors, directors, costume, set and make-up artists all in the hope of winning the statue next February.

Some of Hollywood's most exploitative Oscar-beggars have discovered that if you make a film about a person with a disability starring a cisgender A-lister who Method acts their way through two-plus hours of gut wrenching line delivery while punching various parts of their non-CGI-contorted body for added dramatic effect, the Academy is guaranteed to smile kindly upon them and so yield extra gold in future Blu-ray sales.

However, those who actually live with disabilities have seen enough and they want movie goers to know why.

A Kickstarter campaign launched by filmmaker Salome Chasnoff, UIC faculty members Alyson Patsavas and Carrie Sandahl alongside acclaimed writer Susan Nussbaum aims to raise the $30,000 needed to make the documentary Code of the Freaks—"a blistering critique of Hollywood representations of disabled characters that gives the mic to some of Hollywood's most incensed and ignored critics — actual disabled people."

Nussbaum is an award-winning author and playwright. At 24, she was struck by a car and became wheelchair-bound for the rest of her life. An impassioned activist for all but particularly the disabled, Nussbaum's book Good Kings, Bad Kings won her the 2012 PEN BELLWETHER Prize and critical acclaim.

Nussbaum spoke with Windy City Times about Code of the Freaks and what she and her talented ensemble hope to accomplish with the film.

Windy City Times: You are raising money for this documentary at the perfect time of year in the film world.

Susan Nussbaum: They love inspiration this time of year, and inspirational disability films are among their favorites.

WCT: You noted on Kickstarter that even an uplifting message about a disabled person's life can be damaging.

SN: I think the uplifting part has a lot to do with certain formulas that Hollywood employs when it's using a disability-themed story or narrative and there's various ways in which they do it. Often, at the end, the disabled character is cured so they've been normalized. Or, at the end, the disabled character is killed and the non-disabled protagonist has been taught a good lesson from the disabled character and will now go on to be a better person. There's all sorts of outcomes: the disabled character being the villain is very common.

This kind of imagery has nothing to do with the lives of people with disabilities and, when we [disabled people] see these kinds of things in movies, we think 'what are they talking about? That has nothing to do with my experience.' I am a human who is struggling to survive day-to-day as we all are. There are times that I will go to a movie with a disabled character and be just horrified by what I see. I don't want the lights to come up because I feel ripped off and damaged and I don't want people to come up to me and get in my face and say 'it's great to see you out of the nursing home.' There's a lot of micro-aggressions that are a result of what people learn about us in the movies.

WCT: I recall when the David Lynch film The Elephant Man came out, the BBC documentary QED noted that neurofibromatosis sufferers ( one of Joseph Merrick's earliest theorized diagnoses ) were traumatized by it, thinking that was the life they were bound to lead. It also led to a dramatic increase in bullying. Is that generally the rule?

SN: Non-disabled writers, producers, directors and actors all put their own narrative on these characters. They imagine, incorrectly, that all that disabled people are, by definition, miserably unhappy when, in fact, the misery part comes as a result of systemic conditions that are oppressive. In the health care system, they are very objectifying, humiliating—these are things that still go on and don't end.

There is a real problem with the kinds of perspectives of the people who make these films. They don't know anything. They may do their research. They may talk to some doctors or they might go and 'observe' disabled people at hospitals, institutions; all these horrible places and that's where they get their ideas.

WCT: In your book, one of the antagonists says, 'I can be a good king or a bad king.' When we talk about Hollywood filmmakers focusing on disabilities, are they all bad kings? Is that over-generalizing?

SN: No, I don't think it is. It goes way beyond stereotyping. There are parallels in the way African-Americans were portrayed, or LGBTs. There needs to be input, in a substantial way, from writers and directors and performers who are actually disabled. Right now, there is no place in Hollywood for a disabled person.

WCT: There have been one or two exceptions. Marlee Matlin comes to mind. But there have been points in her career where it seems she has been exploited sometimes even for comedy.

SN: I cannot even begin to imagine what Marlee had to put up with as a deaf actor in Hollywood.

WCT: In your life, finding your way following the car accident, when you see these films, do you feel like they trivialize your own journey?

SN: It's not so much a trivialization as it is the way the public is taught to view what is best when dealing with 'the problem of disabled people.' In the [Clint Eastwood] film Million Dollar Baby, it was made acceptable to kill the disabled character one week in before she'd had time to even speak to another disabled person. The story was manipulated in a way that the disabled character herself begged to be euthanized. It was only after great soul searching that the Clint Eastwood character decided to kill her. I think that it let the audience off the hook. I think people found that inspirational and so uphold the disabled character as an example of courage because she chose to kill herself rather than live that 'unlivable life.'

That's something you end up struggling against—the notion that your life is somehow not as desirable as it would be if you were 'normal'. It is not acceptable that our lives are seen as so burdensome; that they must be burdensome to us. They aren't but these are the kind of narratives that non-disabled people find romantic about disability. The death of a disabled person is much more exciting than imagining the life of a disabled person. When I became disabled, I remember thinking 'what do I know about disabilities?' All knew was what I remember from the movies. I ran through that imagery in my mind and the first character I thought of was Quasimodo and Baby Jane and how she tortured her invalid sister. So all of this imagery ran deep for me and did more to mess with my mind than anything. People know nothing about us and they don't understand that life is hard but it is good.

WCT: So it seems like the seed of Code of the Freaks was planted a long time ago. When did the idea to make the documentary take shape?

SN: Salome [Chasnoff], Alyson [Patsavas], Carrie [Sandahl] and I all knew each other. I was working with a disability rights organization at the time. Because of my love of movies, I decided to string together a bunch of small clips. A lot of people came to watch the result. They were mostly disabled people and it was mind-blowing because they had never really been able to put together the fact that there were that many movies that were so dangerous, absurd or hilariously off-the-mark. Like any group of people who discover new ideas, the knowledge takes the shame off you and places it where it belongs.

WCT: The name of the documentary is taken from the Tod Browning film Freaks. Do you believe that Hollywood filmmakers are purveyors of a modern-day carnival sideshow?

SN: I haven't gone that far, but I think you're right. I think we are seeing disabled people acted out on the screen and the imagery is made for gawking purposes; for the majority of people who are not disabled to think 'Wow. That's not me. I feel good because I'm so lucky.'

WCT: Will the documentary offer any solutions to either filmmakers or filmgoers?

SN: What we're doing is raising questions that have never been raised. We want to encourage people who see a film about a disabled person to step back, think about what they're seeing and ask themselves 'what is the message?' 'What does that have to do with the lives of actual people?' I believe that real change happens from the ground up. Hollywood's not going to change. So we need to see that there is a problem and realize how horribly isolating and unfair it is to imagine what a person's life experience is from watching a movie. The movies are not the place to find out. They don't require a lot of thought or questioning. They push buttons and give you what you came for but it is a thought-free way of looking at it.

We should, all of us, know that popular entertainment is going to give us just enough information to keep us happy. There are loads of alternative ways to get your information but you have to be careful about that too. Most people don't want to discriminate but we live under an economic system that encourages us to categorize and that's what we're used to. It complicates everything.

To donate to the Kickstarter campaign, visit

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