I’m still working my way through a graduate-level class on special education and including students with all kinds of disabilities in the general education classroom. This week’s chapter concerned people with multiple/severe/profound disabilities, including those who have experienced a traumatic brain injury, hereafter known as TBI. My professor likes to post articles related to the disabilities in the chapter of our text, and then ask everyone to pick an article and reflect on it. I chose to read a PDF version of a booklet called “Is This Normal?” written for survivors of TBI and their families. And the more I read, the more I zeroed in on that all-important word: survivor.
I love that word.
First of all, it’s one of the only positive generalizations for people with disabilities I’ve come across in quite awhile. You already know some of the others–“incompetent,” “low-functioning,” “patient,” or “client.” Words that diminish the person with a disability so that he or she becomes, at best, a helpless being in need of perpetual care, and at worst, a commodity. So imagine my pleasure when I saw people with TBIs referred to as “survivors.” That brings up a whole new connotation, doesn’t it? An overcomer. Somebody who’s strong. Tough. Tenacious. Brave. Resourceful.
Now, I know in the throes of a TBI, a survivor might not think of him or herself in those terms. Often, I’d argue, they don’t have time to do so. TBIs often occur in a blink, as a result of an auto accident, a bike accident, a fall, or an illness. I actually go to church with a woman whose sister recently suffered such an injury. She’s recovering very well, but as I said, I doubt she thought of herself as a survivor right away, if she’s gotten to that point yet. But whether or not the survivor of a TBI thinks along those lines, that is what they are. Why? Because they made it through something that’s often fatal–as in, others die from it, people–to millions of others.
So, after our word study, let’s bring ourselves back around to the main point. People whose disability (ies) come from a TBI are called “survivors,” as well they should be. They have quite literally survived. Their disabilities are not congenital, or even acquired in the same way other acquired disabilities come about. No, theirs came most often after significant physical trauma. So we call them “survivors.” But other people with other disabilities? We call them “patients.” “Clients.” “Special.” “Low-functioning.” We judge them by “mental age” and “functional analysis” tests.
Yes, people with TBIs can be, and are, judged this way too, and given the same negative labels. And they shouldn’t have to take that off the able-bodied world anymore than the rest of us do. But what I’m getting at here is, they have an alternative–a distinction that can be positive if the people around them allow it to be. Sure, living with a TBI–or caring for or teaching a person who has one–can be extremely difficult. I can’t even begin to imagine how painful, especially for the person with a TBI, who knows on some level that her life has changed, often irreversibly, and people are reacting negatively to her “new normal.” But if we treated them as people first–and more important, people who survive and thrive–how much easier would that new normal become?
And then I thought, why can’t we do that for every disability, not just TBI?
In case you’re confused, let me explain what I mean. I am well aware that life with a disability “is not a brave struggle,” as someone once said. No one with a disability, myself included, wants to be called “brave” unless he or she truly feels courageous, and we don’t want to be seen as perpetually suffering or struggling. I am also well aware that because many disabilities are congenital or not acquired through trauma, a lot of people with disabilities have not literally “survived.” I do not, in any way, mean to take the distinction of literal physical survival from anyone. But think of it this way:
Whether or not we’re aware of it, disability or not, we all get up every morning having survived. We get the gift of another day, even if all we “survived” yesterday was a bad day at work, a towed car, a screaming kid…whew, I’m starting to think those things aren’t so insignificant after all.
Now, look at the people with disabilities in your life, or the ones you’ve met, seen, thought of, or heard of. What have they survived? As a “veteran,” I can give you a small glimpse.
We’ve survived being teased, misjudged, and underestimated.
We’ve survived comments like, “Don’t expect too much of her.”
We’ve survived misdiagnoses and getting the brush-off from the medical community.
We’ve survived–and survive every day–knowing that there are some things we might never get to do. And knowing that sometimes, such knowledge will hurt.
We’ve survived being dependent on others, some of whom would rather not have to deal with us. We’ve survived patronization, exploitation, and downright cruelty from some of these people.
We’ve survived the stereotypes–“All people with CP have mental retardation.” “All people with autism cannot speak.” You fill in your own.
We’ve survived years of the waiting game–waiting for services, waiting for legitimate help–for crying out loud, waiting for real lives!
And that’s just a few of the items on the list, folks.
The Bible says that each heart knows its own pain. So, no matter what your disability, I believe you can consider yourself an intrepid, resourceful survivor who, in that respect, deserves the adjective “brave.” And if you don’t have a disability? You’ve survived something, too. Your heart knows what it is, because this human life is tough, baby. No wonder Christians compare it to a race–the Boston Marathon times infinity, more like!
So today, whatever you’ve survived, whether or not it involves physical trauma, celebrate your status as a member of one Survivors’ Club or another. And instead of minimizing the lives and experiences of people with disabilities? Welcome them into the Survivors’ Club, too.