I wouldn’t know you had a brain injury and other cultural myths

Listen to this post: 

Stand-up comedian and disability trainer Nina G. has this great line about how if you have a disability, then suddenly everyone you meet has a PhD in the thing you have. Nina G. has a learning disability and stutters. People’s outrageous responses to her stuttering makes up the heart of much of her material. Seems that it’s every day she encounters someone who’s got some kind of miracle advice she can use to quit stuttering. They never ask her if she wants to stop. (She doesn’t. It’s not a problem to stutter.) There is some pervasive cultural belief that everyone who doesn’t speak as fluently as listeners would like them to would want to change how they communicate. Not true.

The other thing Nina gets is that people try to convince her that she doesn’t have a disability. You know, because learning disabilities and speech disabilities aren’t, um, disabilities. She says she does have them. That should be all the evidence one needs in a everyday conversation. Yet somehow people believe that despite her experiences with impairments and with discrimination based on those impairments that she doesn’t have a disability. How do they know that? It must be magic.

This is one I got, but maybe Nina has too:  “Cheryl, I don’t think you have a disability. Most people with a disability have a disability you can see.”

Well, hmm now. Most people with a disability that you can see have a disability that you can see. That’s weird to say but kind of accurate. If you look at the statistics, truly, most people with a disability do not have a disability that you can see or always notice with your other senses. (Side note: My various disabilities are not your business! Also, most people who talk about apparent–or visible–disabilities like this are referring to noticing wheelchairs, walkers, canes, braces, and crutches, not the actual bodies of people.)

My most common encounter is this:  “If you hadn’t told me, I wouldn’t ever know you had a brain injury.”

Let that one soak in for a minute. Then ask yourself if you really can figure out what that means. My brain, like many people’s, is inside my skull. I have some hair, skin, connective tissues, bones, blood vessels, three layers of protective tissue (meninges), and cerebro-spinal fluid. That makes up a lot of my head. And you can see some of those things. But the brain? You can’t see it. And so no, actually, thank you very much, you can’t see if mine got injured.

With a brain injury, there’s sometimes things you just can’t do. There’s other things you can do either well or not well, but the effort that it takes makes you lose your mind or even fall asleep. Likewise, I’m usually just not going to tell you when I’m having brain-injury related problems because that tends to cause more social difficulty and general brouhaha than if I just zip it and pretend I’m thinking like a regular person.

I know that people are referring to my lack of paralysis, facial scars, eyes pointing in different directions, and severe balance issues when they tell me I don’t look brain-injured. But unfortunately, they’re also covertly telling me that my injuries couldn’t possibly have been that bad. Well guess what? They weren’t! But there have been way too many of them. And also I’m not telling you I had brain injuries to prove some point or be ranked among my peers. I do know folks who have come near death or actually died from their TBI who, down the road, also kinda look pretty normal too. The fact is, you don’t know just by observing someone, especially in only one setting.

One of my least favorites is actually this one: “Brain injury doesn’t discriminate!

Well, yes it does. There are risk factors, like being involved in sports and the military. But some of the other ones don’t get talked about. We hear that, for example, men are twice as likely as women to have a TBI. But you have to really go looking to find out that many, many people who have a violent partner sustain head and brain injuries. These are more likely to be women than men. This should color how you read the overall numbers. Are transgender folks included in those numbers where they break people up into men or women? Not sure. But trans hate crime can lead to brain injury.
Being homeless or houseless or living on the streets? Huge risk factor for getting a brain injury. Huge consequence of having a brain injury. A group of people who probably don’t get polled a lot.

There are hard to find numbers out there that Native Americans and Alaska Natives have some of the highest rate of hospitalization from brain injury. You can also find information that African-Americans have the highest death rate.

What about folks who are in prison or jail? At least 25 to 87% have a history of brain injury. Some get their brain injuries while they’re incarcerated. Are people who’re living in group homes, assisted living facilities, skilled nursing facilities, and other structured living being polled about brain injury history or whether they are sustaining injuries from falls or violence in those places?

This blog, and the documentary film “Who Am I To Stop It,” do not generally highlight awareness-raising, statistics, or information as a rule. I think the info I gave you here is unlike the awareness-raising most people do. And in fact, I didn’t mention the common information that’s very easy to find. Today I wanted to give some of that for context to see why these things people say and believe might sound logical to you but are so wildly bizarre to people like Nina and me. And probably also to the many different types of people I listed in this blog post.