Gack! What do you say to someone with brain injury?

Listen to this post: 

It was a few years ago. I was on location, shooting for the documentary. As usual, an interested bystander came up to ask what was going on. I gave my typical, quick answer: “We’re making a documentary about artists with traumatic brain injury. That guy over there, he had a brain injury. We’re filming him.”

Responses to that typically ranged from “Oh!” to “I know this girl who had a brain injury once….” (I’m stopping there because I don’t know about you, but me? I can’t stand to hear those crash stories when I wasn’t expecting them. I get very sad and scared and like a wee bit of warning before someone tells me a story about physical trauma. But I digress.)

So this one time? This time a few years ago? Whoa. The person I was talking to had a very sweet demeanor. She asked why I’m the one doing this film, which is a question I genuinely love. After all, we should always question the person in charge of sharing someone else’s story. How did you get involved? How are you qualified? Are you inside the community or observing from the outside? So I told her, “Well, I’ve had TBI, and” but I didn’t finish.

I didn’t finish because the woman sort of stepped-hopped backward, threw her hand in front of her mouth, and gasped loudly. How was I supposed to finish, when now here was this person who needed taking care of? I didn’t tell her the stories, didn’t share any details. I just happened to be standing around in public talking while admitting to having had a brain injury. Apparently, that is either not OK or it is so far beyond OK as to be literally and amazingly unbelievable.

I don’t remember what happened next. I know I bit my tongue and didn’t say, “I’m not bleeding out of my head at the moment. The TBI isn’t currently happening. You can come back over here.”

Right around the time of this conversation, Brainline.org put out a nice list called 9 Things NOT to Say to Someone with a Brain Injury. Goodness gracious but is it an amazing, wonderful, very fine, awesome list. I really hope you’ll go read it. I’ve read it several times over the years and never get tired of reviewing these microaggressions. It’s by Dr. Marie Rowland, a neuropsychologist. I feel like she’s got my back.

Today I was thinking wait, those are the things not to say. Then what is OK for you to say? Not that every peer with brain injury wants to hear the same things, but there is real value to providing those proactive suggestions once we’ve looked at the things that aren’t helpful.

And lo and behold, Brainline.org, a year later put up “10 Things People with a Brain Injury Would Like to Hear.” These are written by peers with brain injury, and so they’re really nice and extremely powerful even though they’re not going to hold true for everyone. I did notice that several of them were focused on helping. So that got me thinking even more about today’s blog’s take-home message.

A lot of people get antsy around language prescriptions. I’ve even heard non-disabled folks say they’re just plain scared to speak to disabled people because they’re sure they’re going to just say the wrong thing all the time. That sounds nerve-wracking! I don’t think it always has to be that scary, though. If you follow the lead of people around you, you can quickly pick up what they like or don’t like (and some people don’t care). I mean, it’s not like I was gasping and jumping around when I told that lady that I had been injured in the past. She could have followed my lead if she felt comfortable around people with brain injury.

Since every person is different to start with, and everyone has different experiences around their brain injury and life, rather than prescribe a list of things you should say–or even let “shoulds” into this conversation–let me offer this: start with the basics. Like, “Hi, how’s it going?” or “Great shirt,” or whatever you might say to the person that doesn’t matter whether you know about their brain or not. Start in a way that doesn’t scare you, and quite possibly the person with a brain injury won’t seem scary to you. And that will get us back into the conversation that, really, that lady initially wanted to have with me. Just a nice, plain, straightforward conversation between two people.