By Cheryl Green
If you saw me on the street, you wouldn’t think much of it … until I wander into a lamppost and swat it for attacking me. Someday, I hope to stop walking into things. But for now, I do it because I’ve sustained many, many mild traumatic brain injuries (TBIs) that have messed with my neurology. I don’t fully understand what I see. That makes me crash into these lampposts that keep appearing out of nowhere. I’m happy to let you know that’s what’s behind my behavior. But that’s all I’m going to tell you.
I know hundreds of people with brain injuries, from someone with one mild TBI as a kid to people who’ve been hospitalized for months or years after sustaining more severe TBIs. And yet I’m the only person I know who doesn’t want to tell strangers how I got my brain injuries.
I get that people want to know the story. I do. You want the juicy details. And storytellers with TBI want to be understood and appreciated. So we tell you about ourselves. Nearly always, that includes describing the incident, because it’s such a major event that led to our lives now. And anyway, everyone encourages us to keep telling that story.
My reasoning for not answering when you meet me and ask how it happened is not about modesty, embarrassment, or a need for medical privacy. It’s political.
Picture strangers at a bus stop or a store. Someone strikes up a conversation about the late bus, a great sale on apples, or the awful weather. It’s not always positive, but it’s usually pretty superficial. If you appear to have a disability or someone finds out you do, you don’t hear about the bus, the apples, or the weather. You get this:
“What’s wrong with you?”
“How did it happen?”
“Can you walk (see/hear/move/think right)?”
“My cousin had that too. He died.”
Oh, this is getting personal fast.
I disclose information about my disability very vaguely on a first meeting, and only when I have an access need: “Can you please turn the lights down? I have trouble with lights because of a disability.” But for some reason, people who know me will introduce me to new people by saying I’ve had a TBI, as if that’s my most stand-out achievement. People ask how it happened before they’ve asked where I’m from, what I do for a living, or anything that’s either pleasantly superficial or meaningful to me. Talking about the weather? Forget it. People want to know if I was in a coma.
What’s more, they don’t offer to share painful or vulnerable information about themselves. Nor do they seem to recognize it might be painful for me to retell the story. Somehow, people feel entitled to personal, often medical, information when they discover someone’s disabled or got sick or injured.
Let me be clear: This isn’t innocent curiosity. If our disability or access needs are irrelevant to the topic or activity at hand, but you want to know about them anyway, you’re probably about to cross a boundary!
Even though most people with TBI don’t mind telling how it happened, let me give some cautionary points about asking. I want us to look at people with TBI in the larger cultural context instead of focusing on their personal story of trauma and recovery. Before asking someone to share their story, ask yourself these questions first:
1. What if storytelling triggers them?
Do you have a plan in mind to support the person if they become triggered recalling their injury? Will you both benefit from this story? Are you going to share something painful or vulnerable too, in a sense of fairness? (If so, you might trigger the person at this point. Are you prepared for that?) Would you appreciate a stranger asking you to recall a trauma? If you answer “no” to any of these questions, wait for the person to tell you on their own.
2. Will you alienate them?
You might think you’re getting to know the person when you learn about their injury. But asking for wreck stories creates distance. You position them as either overly inspiring for surviving against the odds, or a less-than person with a damaged brain. Meanwhile, you position yourself as just a regular person.
Some of us want to be seen as regular people too. Most of us want to reintegrate into the community. But when folks keep asking disabled people intrusive personal questions, it tells us that you think of us as Others. It tells us you don’t think we deserve privacy, or that you think surviving a TBI is our most interesting characteristic or accomplishment.
Note: Most TBIs are not life-threatening and are therefore easy to survive. Also, not everyone with TBI has noticeable impairments. The spectrum is astoundingly diverse.
3. Are you making the conversation more difficult for them?
We’re regularly told to let go of the past, move forward, and focus on the “New You.” Yet when people frequently ask us how we got hurt, we’re catapulted into the past. Every time people pull us back in time, we have to make the cognitive leap back into the present on our own. Many of us have cognitive impairments that make it difficult to switch topics in conversation. So we might get stuck recounting gruesome details from the wreck long past the time you’re ready to move on to something else.
Besides, when you’re continually referring to the past, it can also make it hard to feel like we’re welcome to bring up everyday conversation topics on things that we might have in common.
My suggestions for the curious conversation partner:
- Ask us the same questions you’d ask someone without a disability. No more and no less.
- Be patient with yourself. Don’t get hasty asking personal questions. Take that time to ask yourself why you’re interested in this person recounting a massive life trauma for you in a casual conversation.
- Be patient with us. We’ll tell you if we want to.
- Focus on what’s right in front of you: another person who’s just as dynamic and interesting as anyone else, right now in this moment.
When I see peers with TBI share personal stories with each other, family members, and service providers, I often witness something powerful. People gauge their struggles and successes against each other, gain motivation, and give support. This isn’t the storytelling I’m complaining about. This kind should always have a space. But I ask people without brain injury to appreciate and recognize that although TBI may substantially shape our lives, we’re still people. We are not brains, and we are more than our stories about our brains. You can get to know so much about us, because there is always so much to know.
Cheryl Green, MFA, MS started in mixed abilities performance in 2001. She switched to media arts, creating film, podcasting, and blogging after becoming disabled in 2010. Her work focuses on disability culture, media representation, and tying disability communities into other social justice movements. Cheryl also advocates for stronger disability access in the media and creates Closed Captions, podcast transcripts, and accessible pdfs. Visit her on the web at Who Am I To Stop It or on Vimeo, and subscribe to her Stories from the brainreels podcast on iTunes.