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Crip Talk: Cheryl Green Talks Film, Brain Injury and Disability Culture

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[Image Description: Cheryl Green on a Tarot Deck for ‘the fool’ card. She wears a flowing green dress, standing against a sunny backdrop of Portland buildings and signs. A small white dog gazes up at her. ]

First and foremost, how do you define disability? 

Defining disability is a complex task, and I like that. Capitalism and the medical model would like to think they’ve got a good definition: someone who’s broken, who’s not as productive or valuable as a “normal” or “typical” person and therefore needs fixing (or pity and charity!). I kind of reject that. They’re not really worthwhile ways to look at something that many people see as a meaningful part of their identity.

 
Something like a traumatic brain injury where you suddenly become disabled is its own ball of wax. If you’ve lived in a certain way, and then you lose a lot of skills (and your friends, job, income, housing, motivation, purpose), it’s clear why disability might be seen as a really negative thing. Our society greatly values intelligence, staying in control of your emotions, and being able to hold a respectable job. Because many people think a brain injury reduces your intelligence (it doesn’t) and it does often affect the way we socialize and communicate, we are a highly undervalued community. I think a lot of discrimination is based in myth, lack of understanding and fear. 
 
You’re currently working on a feature-length documentary, Who Am I To Stop It, following three artists in the Pacific Northwest with TBIs. What was the impetus behind making the film? 
 I feel like practicing art gave me a renewed sense of purpose. I was at a time when I couldn’t work because of my impairments. My life revolved around attempting to rest and going to rehab. That’s a lonely time where you spend much of your energy thinking about all the things that are wrong with you and how your main job in life is to fix them. Very black and white. And it’s very easy to become disenchanted, see yourself as little more than a mistake-making machine, and think there’s never going to be an end to all of it. In 2011, I got involved with Impetus Arts‘ “No One Wants to See the Wires,” which changed my life. I was no longer the weirdo or outcast like I had felt with my friends and family as the only one experiencing an impairment. In this group, I was one of many people with various impairments and rich life experiences that have been informed by living with those impairments. Instantly, I made friends, which blew my mind- because people with TBIs are supposed to be notorious at not being able to make friends. I was validated and appreciated. And as much as rehab was not my goal or focus, I definitely learned some excellent strategies for improving my social skills, communication skills, and organizational abilities simply by being in this arts and performance group. I kind of felt saved, not because I was “getting better” but because I was no longer feeling isolated or misunderstood. It was here that I began writing films. When it turned out that my first, very simple-hearted comedy film started up really intense dialogue about what it means to live with a brain injury, I was hooked on filmmaking. I wanted to know whether anyone else with a TBI felt saved by art. So I got to work inventing this documentary film. 
 
What are you hoping to accomplish with the project?
I have a few specific goals with the film. I want to highlight the reality of social isolation that too many of us are trapped in. I also want to give these artists the space to share about how their art creates a bridge to their community, to possible larger communities, and to their own sense of pride and worth. Plus, they’re artists, and they all make outstanding art. I think people should soak up their art and recognize it as art, not as rehab as it’s often dismissed as. Another thing we’re capturing is that this is a group of very funny people with wonderful senses of humor. It’s not all doom and gloom, sadness and a sense of loss. There are lots of laughs to be had. And because the brain injury community and the disability community are fairly separate, I want to make a piece that is appealing and inviting to the larger, disability community working in social justice arenas. I believe some of the brain injury documentaries out there are made in ways that would alienate disabled people who don’t have a traumatic origin to their disability. I certainly feel alienated by some of them.
 
How is “Who Am I To Stop It” different from other brain injury documentaries? 
First off, I aspire to make a film like “Marwencol,” where Mark Hogencamp’s personality, injury story, and day to day life unfold in the film in a slow, ponderous, careful way. The film spends significant time observing Mark instead of probing him for details to satisfy our curiosity about “the other.” What happens in most depictions of brain injury in the media is they launch in immediately with “Hello, my name is Cheryl. I had a bike wreck in 2010. I went to the ER strapped to a board with a brace around my neck….” Insert as many disgusting or painful details as possible. Proceed next to a list of deficits. By showing this over and over, it encourages people to approach us and demand personal, vulnerable details with no offer to reciprocate or to provide supports and compassion. I feel like we’re zoo exhibits. People say that these films are positive for raising brain injury awareness. But awareness should be considered the lowest goal possible, one so obvious that it never needs to be mentioned instead of the topic of a month worth of events each March.
 
There are several very well done documentaries that are crafted specifically to show the depth of experiences each person has from a range of perspectives. I like that. But you won’t hear a single story of how the people in my film got injured. Because I do not wish to fill audiences with gory details so they can feel pain vicariously. It’s too sensationalizing and overly dramatic. I want you to meet them now, years after rehab has ended, as they navigate their worlds and each pursue their own personal goals.
 
Where does the title of the film come from?
The title used to be a very melancholy and hackneyed sounding “The Art of Brain Injury.” I thought it was cute because it’s about art made by people with brain injury and it’s about the art of living with a brain injury. But people jumped to assuming it was an educational film, which it’s certainly not. (Not all media about life with disability has to be educational.) Also, the title really became rather boring and unrelated to the intensely interesting and dynamic people we’re filming. Art made by a person with a brain injury is still art made by a person. It’s perhaps informed by the brain injury, but not made by it. Right around the time we dropped the name, I decided I would secretly leave it up to the people being filmed to figure out the name. We went to film Kris Haas who has a lot of strong convictions about the importance of survivors inspiring one another to set powerful goals and achieve them. Part of being that inspiration to others means you must be that inspiration to yourself. Your life is happening now, and you should not be so critical of your current self that you stifle your own creativity. Kris paraphrased a letter from Martha Graham to Agnes de Mille and said “who are you to stop your own creativity? If you don’t create your art, the world will lose out for not having experienced your spark of genius.” 
 
I ran into the other room and scribbled “who are you to stop your own creativity?” right under some notes about zombie shows Kris had recommended a few minutes earlier. The question haunted me for weeks. At our next interview with Kris, I suggested casually “What about ‘Who Am I To Stop It’ for a film title?” All the air was sucked out of the room as everyone gasped in unison. It was settled. We would look at the creative drive and the power and agency each one of us has to explore our own creativity at any point in our lives.
 
What do you think are the biggest misconceptions about people living with brain injury?
The misconceptions can be pretty different depending on what people think they know about you. If they think you had a severe TBI with a coma and you are now out in the working world and/or have no physical injuries, most people see you as a walking miracle who can accomplish anything you set your mind to and don’t ever need accommodations or have to deal with social realities like poverty, discrimination, isolation, or depression. But if you can’t work or you live with significant impairments that others can readily observe, they think you’re stuck in a static, impaired state. This group of people is often described as being like adult-sized children. And people really set the bar low on survivors’ ability and right to be proud of themselves, to contribute to society, to have a sense of humor or compassion for others. If they think you had a mild TBI, most people see you as either “a psych case,” a faker, or a whiner if you have any impairments lasting beyond 3 weeks to 3 months. They think you can and should be able to accomplish anything you set your mind to and don’t ever need accommodations or have to deal with social realities like poverty, discrimination, isolation, or depression. 
 
In general, the perception is that anything that’s not working for a person with a brain injury is because of the person or their brain injury. There isn’t emphasis on the institutional ways that people with cognitive or social communication impairments are discriminated against constantly in large and small ways. If our accommodations needs are unusual, people too often don’t want to put out the effort to meet them but prefer to leave us and say we were just too annoying to be around. There’s almost never enough rehab or enough peer-based support. Or if you don’t want those things, you’re seen as being stubborn or not aware of the extent of your own impairments. Supports such as SSDI, SSI, SNAP, and others are extremely difficult for someone with a brain injury to get. Applications are not accessible, and the level of follow through and follow up is often too hard to understand or manage on one’s own. But there is no accounting for that. So when one of us is in poverty or becomes houseless or goes to jail or the psych ward, it is entirely our individual fault. I don’t see an examination of how the inaccessibility of society plays a role in the extreme number of us who are dropped or incarcerated, especially when you are looking at individuals who are in an ethnic or racial minority, a sexual minority, or who have been in poverty a long time.
 
In addition to the film, you recently wrote a fantastic essay for the Criptiques anthology about brain injury culture versus disability/crip culture. What do you see as the biggest cultural differences? 
The biggest difference between brain injury culture and crip culture that I observe is that people with brain injury love to tell how we got injured and want everyone to hear about it and ask about it. Crip culture looks at disability or impairment as experiences that can’t and shouldn’t be reduced to a list of details or a short, gory tale. Likewise, crips don’t usually like to encourage people to seek details of how they ended up in whatever state people perceive them to be in. It’s so dehumanizing when strangers demand these details, and they do all the time. It’s like having an observable impairments makes you less human, less deserving of privacy and dignity, and just the bearer of a weird or yucky story. Yet because brain injury so often brings people to a near death experience–and some people do die and are revived–there is this amazing amount of curiosity around it and a desire to share with the world what odds you overcame to get where you are. In the crip community, the notion of “overcoming” your disability is so insulting. It implies that the best disabled person is the one who appears the least disabled, the one who either recovered or can hide what’s going on for them. In the brain injury community, the emphasis is on the individual to recover at any cost because there’s a belief that to be a great person again, you have to re-become your old self. In crip culture, the emphasis is on a shared experience of this world of people with and without impairments and how many things and attitudes in society actually are what disable a person, not their impairment. There’s more pride in crip culture for being who you are exactly how you are, and there’s no demand that you go to rehab or fix yourself. 
 
What does disability culture mean to you?
Disability culture to me means people are getting together to create thought, criticism, questions, art, literature, and community around the idea that disability or impairment are OK, and people with them are OK. It’s part of life, always has been, always will be. After all, disability–whether you’re born with it, develop it, or acquire it–is a natural occurrence for people and animals. Likewise, it’s all culturally defined, not indisputable fact. Where the actual disability comes in is in a world that says “No, that thing you have going on isn’t good enough or healthy enough.” I question why the model of what is “normal” and what is a “deficit” is as rigid as it is and why so many people buy into it so easily. Disability culture is saying back, “No, we get to define who we are, not a medical provider who has no personal experiences with the impairments I have. Not a medical provider who reads my chart and automatically sees me as a list of problems to fix.” Disability culture does not bright-side everything and say that disabled people are enlightened and perfect, and non-disabled people aren’t. We’re not using that binary or any other binary. If we did, we’d be acting out the same tactics that are acted out on us. And I also appreciate disability culture for its emphasis on the way that different parts of our identity interact with each other such as ethnicity, home culture, sexual orientation, gender identity, age, and any other aspect of yourself that you can think of, whether it has a name or not. I like that. That attitude appreciates what well-rounded, complex, complete people we are as people with a variety of experiences around disability or impairment.
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2 thoughts on “Crip Talk: Cheryl Green Talks Film, Brain Injury and Disability Culture

  1. Pingback: Words I Wheel By

  2. Pingback: Caitlin on BBC’s Ouch! | Where's Lulu

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