Isolation, art, and transformation after brain injury

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I wanted to take a some time to sort of unpack this film for you. The meaning of the film and my own politics around disability have changed and grown in the two years we’ve been working on it, which you might not know. If you’ve been following for a while, you might notice that the name of the movie itself and the tagline have changed. There are very good reasons for that. My goals for the film haven’t changed. And I hope that the new wording reflects those goals. Commence the unpacking.

Old title: “The Art of Brain Injury.”

Cute. Maybe. The topic seems clear, and the kinds of people you’ll see in the movie seems clear. But it sounds stuffy. And it ended up feeling too medical. To put “brain injury” in the title of the film felt too much like TBI is the only thing we will focus on. In fact, our film focuses on TBI much less than many TBI documentaries out there. So if our goal is to show people with brain injury as amazingly complex and fascinating (cuz we are) and as discriminated against (cuz we are), then we couldn’t limit the audience’s preconception of the film. The topic isn’t actually brain injury or necessarily just the art made by people with brain injury. The topic is people. I would never say, “The people in the film just happen to have brain injuries,” though I know many people who use that language. We chose the individuals specifically because they have sustained brain injuries; it was not a happy coincidence or minor part of our choices. Likewise, years later, they all still face effects and impacts of their injuries whether it’s individual symptoms or societal stigma. It’s a hugely important part of their lives that we don’t downplay. If I’m downplaying anything, it’s the story of how each one got injured. You won’t hear those stories or see coma and hospital pictures in this film, a very rare choice in the media these days.

New title: “Who Am I To Stop It.”

As abstract as the film’s logo itself! To be honest, I don’t know where the idea for the logo came from. I handed a synopsis of the film I hoped to make over to graphic designer Theresa Pridemore. She came back with a delightfully whimsical, curious, and dynamic logo. And we basically loved how innovative and open-ended it is.

 A profile of a person's head where most of the head is actually an empty bowl. Out of the top of the bowl, a red fish bends and splashes out, leaping free of the head. Next to that is the film's title "Who Am I To Stop It" in block text. The profile and words are the same color green-blue. The fish is red, and "Stop" is in red. A green triangle is below the words, and the color matches the water splashing out of the fishbowl head.[A profile of a person’s head where most of the head is actually an empty bowl. Out of the top of the bowl, a red fish bends and splashes out, leaping free of the head. Next to that is the film’s title “Who Am I To Stop It” in block text. The profile and words are the same color green-blue. The fish is red, and “Stop” is in red. A green triangle is below the words, and the color matches the water splashing out of the fishbowl head.]

I love the Dr. Seussian quality of the fish. Dr. Seuss was a spectacular author, artist, political cartoonist, activist, and all around great guy. (I have a post coming up soon about how he wrote about disability! Did you know he wrote about disability? Most people don’t. I listened recently to an hour-long radio documentary about his life and work. And no one mentioned disability.) The other thing I love is that I truly can’t tell you what the logo image is with complete certainty. When people ask me what it means, I just ask them what they think. 100% of the time, what they come up with is one piece of exactly what I hope this film to do.

  • Feeling like a fish out of water.
  • Creativity bursting forth.
  • Unexpected surprises.
  • People have more inside their heads than you might realize or give them credit for.

All of these things have come up, and I say yes. Yes, these are all in the film.

But the film’s title. This title is my attempt to call out the cultural imperative that people consider brain injury and disability to be purely the responsibility of the person with the injury.

  • If you don’t “improve” as much as someone else, well, you didn’t try hard enough or didn’t want it badly enough.
  • If you have more symptoms than you look like you should, you’re probably just mildly crazy because, after all, you look fine!
  • If social, educational, work, and family situations don’t work out, it has to be your fault because well, you have brain damage, and people can’t be expected to accommodate that.

(I have been told all of these things. My peers are told these things. I am not making this up.)

So I challenge every single word of that.

But when a peer with brain injury takes in those sentiments and believes them, before too long, they might stop themselves from pursuing their dreams or even pursuing reasonable accommodations. They might want to lodge a complaint against a business or school practicing disability discrimination but stop themselves because they believe they can’t make a difference. They might decide to stop their creative impulses because they’ve come to believe they’re wrong, sick, too negative, too distasteful to others, or not good enough. When someone doesn’t have a sense of home, community, and pride, some of us look for those; some of us assume that we’re not deserving of those things or that they must not exist.

And so I ask, who are you to stop it? Our ableist society is definitely going to try to stop you by telling you that you are broken and that making reasonable accommodations is too hard-confusing-costly-unneeded. If you do have a responsibility as an individual with brain injury, it is to not internalize ableist garbage. Speak your truth. Or write it, rap it, sing it, paint it, strum it, type it, stomp it, click it. Let the world know you are no less human just because your brain got injured. The title may sound esoteric and philosophical. I intend it to be extraordinarily political.

Old tagline: “A documentary film about artists with brain injuries in the Pacific Northwest.”

Honest. Clear. Not interesting. Of course anytime I hear of another artist in the Pacific Northwest who has had a brain injury, I’m instantly and completely intrigued. I want contact info, pictures of their work, podcasts they were on, and anything I can find out. Other peers in the brain injury and disability arts communities have a similar response. But it turns out that’s nowhere near universal. When your tagline mentions “artists with brain injuries” the general audience out there thinks it will be educational or a movie about people in art therapy. If you know me, you know that’s not this film or any film I’ve made. I wholeheartedly support those films being made. They’re just not what I’m currently working on.

New tagline: “A documentary film on isolation, art, and transformation after brain injury.”

I chose three artists with brain injury for the film because I felt like being artists is what they had in common. As the filming progressed, being isolated is something even bigger they have in common. It’s all to very different degrees. And in fact, any one of them might say they don’t feel isolated. They would be right. It’s not my call. But whether it’s someone who lives in a place where all the housemates have brain injuries and none have other disabilities or no disabilities; whether it’s someone who doesn’t know another person living with brain injury who can relate to them; or whether it’s someone who doesn’t interact with other people for weeks on end, isolation is happening. All three featured artists have talked to me about some instances of isolation or feeling that they feared they wouldn’t belong in a specific situation or place because of their brain injury.

And the other key thing here is the transformation. It means the world to me to mention this here: I do not put all the responsibility for transformation on the person with a brain injury. My personal and political goals revolve around inclusion and equity. That doesn’t happen when one group of people is asked to change to conform to another group, as in people with brain injury need to go to rehab to get themselves more normal so they can behave in social acceptable ways and get a job. That’s assimilation. So while I see the featured artists absolutely transforming their attitudes and situations in many different ways through their artistic practices, I’m getting at something else as well. I want you, any of you with and without brain injury, to watch this film and begin to transform yourself and the community. The first steps toward transformation involve agreeing something might need to be changed and learning to recognize what that is. Then, ally yourself with others who will work on that change. You don’t have to wait long; even in these beginning steps, transformation is taking place.