In Disability Wisdom’s article “I’m A Fighter… But Not How You Think,” the author gives us a series of words ascribed to people with disabilities:
“Fighters. Warriors. Brave. Courageous. Tough. Heroes. Beating the odds. Overcoming obstacles every day.”
These are words that are used in our community as well—I grew up with my own rare neuroimmune disorder, NMOSD, hearing terms like “NMO warrior” or hearing people say they are “fighting NMOSD.” It’s important, to a lot of people, to be able to self-describe in this way—it makes them feel strong.
But these terms also creating a framing for how people ought to view their disorder, and by extent, the disabilities and/or symptoms it may have caused. This framing and its problems, as the author of the above article goes on to describe, is as follows:
“The stereotype of the disabled warrior often assumes that the disabled person is fighting the disability itself, or obstacles closely related to the disability. We are seen as confronting ordinary circumstances with extraordinary courage. This depiction is incongruent with many of our experiences. Some of us feel overwhelmed by the obstacles of disability, while others of us don’t see them as obstacles at all, and thus don’t see ourselves as bravely overcoming anything. Further, for those of us who feel that our disability is integral to who we are, the disabled-warrior depiction sets up the sense that we are fighting against a part of ourselves, a kind of unhealthy internal conflict.”
There are times where I’ve agreed with this sentiment—that viewing all of this through the lens of being a warrior or a fighter alienates me from the most damaged parts of myself, the parts that needed the most love and care. For years, I could barely stand to look at myself, my body, for all that it had done to “ruin” my life. I felt betrayed by it, locked into a continual fight with it where I attempted to drown out its fury with medication while it, in tentative dormancy, plotted my next attack. Now, rather than view my body as the traitor, I try to view both the mind and the body as me, and do my best to take care of both.
Other times, I think these warrior-esque sentiments can and should be used as a self-declaration—it’s nice to have a mantra, something to say about yourself again and again until you feel powerful, even if the disorder is incurable or the symptoms are untreatable. Saying “I’m a fighter! I’m a warrior!” in this case can be self-soothing, a means by which to survive a life entirely deviated from its initial path.
In the end, keeping both of these perspectives in mind—that there are people who feel strongest when they are called a warrior, and that there are people who just want to be human, allows us to be more conscientious of how what’s positive for one person can be damaging for another. I know for me, as a child, I was told again and again how strong and brave I was for not crying when the IV blew out again and they needed to find yet another vein. I would hold everything in, scared that if I did cry, I would no longer be strong or brave. But in not crying, I pushed down all the human parts of me—the scared little girl I was, the pain of everything I was going through, buried deep in my heart due to my fear of not being praised as a “brave little soldier” anymore.
What I’m asking us all, as people who’ve gone through too much, is that we try to learn to forge our self-definitions that make us feel our very best without attributing those labels to other people.
In the following articles, you will find three perspectives on being called strong or a superhero. There’s another kid, just like I was, who took the label of the Incredible Hulk in stride, a woman who says she is no superwoman, and my story, as a child going to SRNA Quality of Life Family Camp.
