Is a brain injury really invisible? Depends on who you ask.
You know how people sometimes refer to traumatic brain injury as a silent epidemic? And you could say disabilities from brain injury are invisible. No one can actually see your brain in action in everyday life. For those of us living with effects from brain injury in ourselves or someone close, we know it’s not so invisible or silent. Spend one day in my house, and you’ll observe me working from three calendars that don’t match and going up and down the stairs trying to figure out what I was looking for (a nap). It’s pretty visible. But sure, I try to hide some things in public because people make fun of me and my newer quirks.
Many of my peers wish they had something visible like a wheelchair so others would know to be accommodating. But no one manufactures outside-the-head brain wheelchairs. So we move forward knowing that people can’t see what’s really up when we struggle. Sometimes, they don’t even believe we did something ourselves when we succeed. Places like support groups and even this blog help us find a place to really talk about what’s going on with other people who can relate directly. We meet each other and see how there really are a lot of us. We also share different ways to have self-pride, advocate for ourselves, and talk openly about our wants and needs. These things help make invisible struggles more understandable to others.
Who are those survivors? We’re not all alike.
Brain injury stories are showing up a lot in the news, movies, and documentaries. But a lot of people still don’t see someone like themselves in the media because many of the stories focus on veterans, athletes, and very often, white, middle class brain injury survivors. When one of us doesn’t fit what’s shown in the media, it can sometimes be even harder to be understood. It’s odd because we widely recognize that people without brain injury are individuals. Somehow when disability is in the picture, we get lumped into one monochromatic blob. That makes it hard to distinguish us from each other or provide appropriate support and accommodations to each person. If you don’t look or act just like people with brain injuries in the movies, it’s frequent that someone will call you out on that. I’m not sure why, but it’s very real.
Disability Visibility Project
Longtime disability researcher and activist Alice Wong recently developed the Disability Visibility Project, which sounds like just what we need about now! It’s one more way for us to represent ourselves in the media. The project has teamed up with StoryCorps San Francisco to create a storytelling archive of stories from people with disabilities.
A little background: StoryCorps is an independent nonprofit. They provide people of all backgrounds and beliefs with the opportunity to record, share, and preserve the stories of our lives. StoryCorps partners with the American Folklife Center at the Library of Congress. They also partner with National Public Radio, which broadcasts with them every Friday on Morning Edition. The Americans with Disabilities Act was passed in 1990. So this project was developed to gather up as many stories as possible from people with disabilities just in time for the 25th anniversary in 2015.
From July 2014 to July 2015, anyone going to one of StoryCorps’ three locations (and their mobile tour) can contribute their oral history. Having these stories recorded and available to the public will preserve disability history, making them accessible to all.
Alice Wong is careful to mention that the use of the word “Visibility” in the project name is metaphorical. It is not meant to privilege one sensory experience over others.
Please visit www.disabilityvisibilityproject.com to find out more. If you are in Chicago, San Francisco, or Atlanta, you can go to a StoryCorps recording studio. If you are anywhere else in the U.S., go to www.storycorps.org/mobile-tour to find out when the mobile recording studio will be in your area. Make a reservation online!
We are not invisible, and we are not silent. But the reason we are not in the media as ourselves is that sometimes we are hidden away or silenced. It’s our right and obligation to step up and share our stories so that people can really get to know who we are and how we contribute to a vibrant, rich society.