It’s estimated that more than 80,000 Oregonians are living with disabilities related to a brain injury. That includes Portlander Cheryl Green, who sustained a brain injury in 2010. Since then, Green has showcased the experiences of brain injury survivors through a number of projects, including a podcast, documentary film, short videos and her work as a self-described “access artist.” She also advocates for their needs as a member of the Oregon Brain Injury Council.
We’ll talk with Green about her disability justice work and how art can play a role in that movement.
Note: The following transcript was transcribed digitally and validated for accuracy, readability and formatting by an OPB volunteer.
Dave Miller: This is Think Out Loud on OPB. I’m Dave Miller. It’s estimated that more than 80,000 Oregonians are living with disabilities related to a brain injury. That includes Portlander Cheryl Green, who sustained a brain injury in 2010. Since then, Green has showcased the experiences of brain injury survivors through a number of projects, including a podcast, documentary film and short videos. She also serves as a member of the Oregon Brain Injury Council. She calls herself an access artist. Cheryl Green, welcome to the show.
Cheryl Green: Thanks so much for having me.
Miller: What does it mean to be an access artist?
Green: I started out making films, but I do a lot more with captioning, transcription and audio description for films and museum exhibitions. And for me, it’s not about legal compliance, which is necessary and is good, but I think is too low of a bar to set. Filmmakers, podcasters, visual artists put intentionality into their artistry. So I think accessibility needs to have the same level of artistry. I consider my audio description, my captions and all of that to be not only artistic themselves, but also part of the art. So they feel really integrated in the film or the museum exhibition, rather than a separate add-on.
Miller: As you’re describing that, what came to mind was translators. It’s like somebody translating poetry from one language to another, where they say I’ve taken this initial work, but the act of changing it into another language, is an act of artistic expression, not [only]
a=a in a different language, but its own artistic creation.
Green: Yep. I think that’s a really apt analogy.
Miller: Can you think of an example of what that might mean, the kinds of decisions you make as you’re doing that?
Green: Yes, I think they’re more obvious with audio description, which is a way to describe the visuals of something so it brings in access for blind and low vision audience members. It’s so much more creative than just that. People are doing some kind of action in a film. I could say that they move their arms around, which may be literally true. And I could say I described it. It’s accessible. But you have no idea why they’re moving their arms, in what way they’re moving their arms. So I have to take in the whole scene, who the people are in the scene, and not be overly interpretive and not editorialize. But there’s not a lot of room for audio description because it comes in between pieces of dialogue and key sounds. So I have to tell you, very quickly, a story about why they’re moving their arms around and who they are. So that, I think, is where it has something in common with translation. I have to make it meaningful, not just “there go their arms,” because that doesn’t help the story move forward at all.
Miller: I want to turn a little bit to your own personal story. When you were asked by a podcast interviewer about four years ago to tell your story of how you got a significant brain injury in 2010, you declined. Why?
Green: Yes, I very forcefully declined. I think they cut some of the forcefulness out. I declined because I was there to talk about cooking, food and eating after a brain injury. And I just didn’t see how it was relevant to hear how I got injured. What’s relevant is what happened after I got injured. There’s this demand on people with all sorts of disabilities, but I’ll talk about brain injury. There’s this demand to hear a really scary story, something that may even re-traumatize the person with a brain injury. I don’t want to tell you how I got hurt. I don’t wanna think about that moment. It invades my head whenever it wants to, and that’s bad enough.
You don’t learn anything about me just to hear this scary story. So I don’t understand why I’m asked, especially by a stranger, when I’m here to talk about cooking. I don’t understand why it’s necessary. It feels invasive and unnecessary. And I think that line of questioning also puts way too much emphasis on the individual story. But I’m not an individual in a vacuum. When that injury occurred, this whole cascade of things happened: not being able to go back to work, not being able to cook – which we talked about in the podcast – losing all my friends. It’s just so many life shifts, and then there’s economic implications. I had tremendous family support, and some people don’t and they end up losing their housing. That is much more relevant than this one scary story about this one moment in time.
Miller: If you don’t mind, I am curious about some of what you experienced after the injury, to dig deeper into the overview you just gave. I’m curious about your senses, to start with – visual, auditory, others. How did your brain injury affect the way you took in the world, the way the world appeared in your brain?
Green: And appears. So, I think I pass as non-disabled for the most part, but my sensory system is still pretty messed up. I just emailed my neuro-optometrist this morning. My peripheral vision is so wacky. I don’t understand when something’s in my periphery and then it comes in front of me. So that might be a person passing me on the sidewalk, somebody coming around the bend to wave hello to me. My brain doesn’t really make that fluid movement from peripheral to central. So I know you’re there, I see you in my periphery, then I see you in front of me. And I don’t know how you got there.
Miller: Some of the frames in the movie of your life are missing in the moment?
Green: Yeah, that’s an interesting way to put it. But it’s scary that they’re missing. My vision used to be a lot worse. My eyes don’t point in the same direction anymore. I was having occipital lobe seizures, so really kind of beautiful hallucinations. But that’s scary sometimes. Things would bend in my periphery. I still can’t drive, 15 years later, because I have this exaggerated startle response and these things moving in my periphery, like cars on the street. They just confuse and confound me.
My hearing has become hypersensitive. I can hear everything around me and it’s a jumble. If there are two people talking at once, it’s a complete disaster. If it’s 20 people, I can sort of handle it because it turns into a mush. But it really affected my social life, being able to go to a restaurant or go to crowded places. I work entirely from home now. I’m very distractible, so noise, lights, movement, they are all this assault on my brain and they wear me out. It’s a lot better than it was. I really wasn’t very functional for a while because of this, but it’s still really hard.
Miller: How did everything you’re talking about affect your own relationships, your own social life?
Green: I think early on, most of my social life was destroyed. I talked really slowly, which confuses people. And people would finish my sentences a lot or talk over me. And I would give up and I sort of clammed up. I got into this shell because it was so tiring to have people talk over me or be confused by me. I was confused by everyone. I picked fights all the time. I just thought everybody was so confusing and so wrong, and I just couldn’t see any perspective other than my own weird, warped perspective.
So I pushed a lot of people away. When you don’t accept invitations to go places with people, they stop inviting you. So I really lost a lot of friends. But I was part of the mixed-ability art scene in Portland, back when I was non-disabled. I reengaged with them and got involved in this storytelling performance project for people with disabilities. And that was a group that didn’t push me away and [who] I didn’t push away.
It was people with all sorts of disabilities, including brain injury. And I think we had a good way to communicate with each other about our access needs and how to be supportive. And when I blurted out really ridiculous or rude things, or started singing ‘80s songs for no reason, they just waited it out, didn’t judge me and let it pass. It was really important to be in the cross-disability community at that time and the arts space, to rebuild friendships.
Miller: But it seems really striking and important that you had that existing relationship with people who were welcoming, inclusive and aware of all kinds of ways that people show up in the world and all kinds of abilities. You had that before your brain injury and you were welcomed by this community you were already in. I mean, have you thought about what your life would have been like if you hadn’t already had those connections?
Green: Yeah, I do. I think my life would have possibly taken a trajectory like a lot of people with brain injury. A lot of people doubt their own humanity. Who am I? I can’t work. Who am I? I can’t do these things. I’m not myself anymore. I’m nobody. A lot of people have an identity crisis and a lot of people who lose those friendships or lose work don’t have a quick outlet to find something new. And that’s very lonely and very scary, and can feel very hurtful. I did also get involved in the brain injury support community in Portland and that helped a lot too. There were other people there who blurted out random stuff or cried a lot or got confused, and we were very, very helpful to each other and very supportive. That was a great space too.
Miller: [You] made a feature-length documentary called “Who Am I To Stop It.” And Cheryl, I want to play a short clip from this movie, then we can talk about it. This is Dani, who’s one of the three people who you profiled.
Dani [Clip from “Who Am I To Stop It”]: I don’t have one person I can call a friend and it’s pathetic, I know. But my grandma says you need to do other things. But what can I do? I can’t go to college because I failed my CPT and I got below ABE, which is basic education. And a job, and I get that. But I don’t have patience and I cuss like a sailor. I don’t know where I fit in anywhere but getting high and drinking coffee all the [beep] time. I don’t mind it, but after a while it gets lonely, you know?
Miller: So, Dani is one of the three people you focused on, all of whom make art in various ways and all of whom have brain injuries. What made you interested in this topic in particular, what making art means for people with brain injuries?
Green: It was because that’s what I did. When I got involved in that storytelling project called “No One Wants to See The Wires,” I ended up writing this short comedy film called “Cooking With Brain Injury.” I forgot to give it a real title, but it’s based on not being able to cook after a brain injury, and it really showcases this emotional roller coaster, being confused, and not knowing how to do basic stuff anymore and trying to laugh about it.
People would tell me that they didn’t know what was wrong with me or what was hard for me. And I thought I was telling them, in no uncertain terms, but people still didn’t get it. And there were people who, when they watched “Cooking With Brain Injury,” suddenly got it. “Oh, I see what’s hard for you,” even though a few things in the film are made up because I wasn’t going to recreate what I did in the kitchen. I ended up with grease burns all over my face. I’m not gonna recreate that. But there was something about people who knew me, watching me on screen as if I were an actor, that gave them that distance to really hear me and understand me.
Miller: And these are people who are close to you?
Green: My mom is somebody ... There’s a post on my blog with my mom saying, “Now I get it. Now I hear you.” So I wanted to focus on what other artists are doing. And I did not want to do an art therapy film. I love art therapy. I will never say bad things about art therapy. But disability storytelling and disability media is not always educating non-disabled people. And it’s not always about art therapy, like some people think it might be. I wanted to profile people who had something similar to what I did, which is the sense of isolation, kind of confusion and self-doubt. And then what happens when you present your art to someone else and how they hear you more clearly.
I think the film really shows that. And here’s Dani just really speaking from the heart in that clip that you played, about the things that she’s lost. I hear, in that clip, that she’s maybe not aware of some of the resources that are out there, like accommodations in school and accommodations in the workplace. But either way, she’s lamenting a lot of stuff that she’s missing. And then she performs some of her raps and her poetry in the film. And the response that she gets is just incredible. People coming toward her when they experience her art.
Miller: I’m curious about when you said you didn’t want to make a movie about art therapy. How would you describe some of the standard tropes of storytelling, when it comes to people with brain injuries? And I guess I mean the tropes that you’re tired of?
Green: Yeah, and we only have 20 minutes. How can I do this? [Laughter] One trope is the golden boy who had it all and lost it all, and has a miraculous recovery. That’s a big one.
Miller: Where the goal is Golden Boy returns back into who he was?
Green: Or into a new normal. That phrase, “new normal,” I feel has become a trope. There’s this desire to have this story where somebody has it all and loses it all, and hopefully gets something back. And the main point of it is to inspire non-disabled people. That’s a big trope. Oh my gosh, I feel overloaded by how many tropes are in my head. I can’t fish out any more.
Miller: Then, let me flip it around. What do you think is missing? What do you want to see? What do you want to put out in the world yourself?
Green: I definitely want to see more stuff that is made where the leadership of making the art is people with disabilities, disabled people, deaf people. And I want it to be made accessibly. A lot of stories, a lot of films get made and they don’t caption it or they don’t leave any moments of silence for the audio description to come in. Even disability stories sometimes are still not made in an accessible way for our community to enjoy them and feel immersed in them.
I definitely want to see more brain injury stories that don’t show photographs of people in hospitals or car wrecks. I did make a film that had that. But I co-made it with Karl Moritz, a Portlander, and he wanted that in his film. So we put those photographs in there. But I want to see more films that don’t have gory stories. And I want more stories that are for the disability community, that don’t have to cater to non-disabled people. And let me explain myself. I want us to see us on screen for us a little more. It’s all welcomed and it’s all needed.
Miller: We’re gonna be talking tomorrow on the show about Oregon’s new brain injury navigation program, which helps connect brain injury survivors to a whole array of support services. You advocated for that program as part of your role in the Oregon Brain Injury Council. What are your hopes for what this is going to mean in the coming years?
Green: Oh, I’m so excited about this program, and I had fun going to D.C. and meeting with senators and representatives to talk about it. What I hope is, like that clip that you played of Dani, that anyone in her situation will never have to say those things, that they can call the resource navigation line and get set up immediately with people who can guide them through. What are all the areas where you need some support or you feel like you’re not reaching your goals? Here are the resources to get you there so that you don’t feel like the biggest thing in your life is what you’re missing.
I have huge hopes for it. We have great conversations at the monthly meetings and hear about how many people are calling and getting connected to the resources they want. It’s incredible. I mean, there are so many resources I knew about before my brain injury that I couldn’t remember or didn’t know I could qualify for after. And I was slow to get set up with some of those resources. People are going to get them faster now.
Miller: We started by talking about what you had lost or what changed, in serious and negative ways, from your brain injury. Are there also things that you feel like you’ve gained that you’re happy that you have now?
Green: Oh, it’s a complicated question. I love the community that I’m in. This was not the career trajectory that I was on. And because I couldn’t go back to my job at OHSU, I had the opportunity, because I had financial support from loved ones and family, to remake myself, to try a new career, to get a lot of counseling in that early time. I wasn’t working, so I had time for rehabilitation and counseling to get through the transition, and that was really great. There are still tools that I use today.
I don’t think that any of the physical or sensory changes I’ve had are positive, other than the hallucinations. But I don’t get those as much anymore. I don’t think it’s positive, no. But I think that the life course that I’ve been able to go on has a lot of positives, and has a lot of growth and learning in it.
Miller: Cheryl, thanks so much for joining us. I really appreciate your time.
Green: Thank you so much.
Miller: Cheryl Green is an access artist with a focus on creative captions and audio description. She’s also a podcaster and a documentary filmmaker.
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