It’s a common trend to associate people who are disabled or chronically ill with the term “warrior”, and to describe their life with the condition in question as a “battle”. This is especially prevalent in news stories about people who have died from cancer for example. It’s also sometimes said that the person lost their battle.
The same happens in regards to Spina Bifida. I cannot count the number of times I’ve seen a person with Spina Bifida referred to as a “Spina Bifida warrior”. It’s also common for those with Spina Bifida to adopt the descriptor for themselves. That’s all well and good. I firmly support a person’s right to refer to themselves and their illness or disability in whatever terms they are comfortable using.
For me though it’s never made sense. Thirty years of living, upwards of fifty surgeries in that time, and I still do not see myself as a warrior. I can’t. Spina Bifida isn’t a war I’m fighting; it’s the only life I’ve ever known.
As I said I’ve had upwards of fifty surgeries throughout my life, countless tests, and blood draws on top of that. But even the most high risk surgeries I’ve undergone haven’t been a battle. They were necessary for my survival and quality of life.
Being disabled has meant that I’ve spent a fair amount of time fighting other battles though. I’ve become practiced in combating ignorance and discrimination, adept at identifying and dealing with Ableism. In this way I’ve been more at war with the world around me than my disability. In that same way my body is not a battlefield, it’s my home.
Through all the ways it’s changed, that I’ve changed, grown, broken down and been built back up, my body has been my home. Even on the days when pain lays me out, when my eyes won’t focus or my stomach is throwing a fit, this is where I live. This is where I will keep living, especially on the days I think about not. Because even on those days my home keeps me safe, sees me through.
So no, Spina Bifida isn’t my war and I am not a warrior. I am a disabled person living the only life I have, the best way I can. I love my body for its strength and try to have grace for its weakness. In a world that makes both of those things painfully difficult, I’ll take those small victories.