Audacious Life
There's a lot of talk about words in the disabled community. There are labels, qualifiers, politically correct terms, and personal preferences, not to mention pronoun wars. I refer to myself and to others who are bipedally challenged as gimp. That word has had strong negative associations. Overlooking these better-known definitions, I may point out that it also refers to a "cord of various colors/texture/materials bound together for strength and beauty." Look it up; I'll wait. I begin with words because there’s a word I've been wrestling with this past few years. It began with a song that wanted to "see me be…..", was pushed along by all those passers-by who felt compelled to tell me "I am so……", and ignited a firestorm over a "lady named Cait." I’ll bet that if you’re in the disability community, you know exactly what word I’m talking about. You’re probably singing the song. You’ve probably bookmarked (or ranted at) the video. Maybe it started as an innocent call to find courage within ourselves. But we were derailed with the patronizing label of “inspirational.” Then there came a flurry of videos, memes, songs, and blog posts that ended with an all-out throw-down, with everyone claiming furious ownership of the b-word.
Who is brave, and who’s not? What is brave, and what isn’t? Though memes can be as infuriating as anything else that boils a complex issue down into a picture and a few words, the social media frenzy got me thinking about my relationship to bravery.
Many people are surprised that a person like myself, who has been a performer most of her life, would have issues with being stared at in public. But those of us who transition into chairs later in life are often unprepared for the gut-wrenching terror that can occur on our first outing. We must learn just how inaccessible the world is, and how ignorant most businesses are of ADA rules, and take it in stride. (These new skills go hand in hand with PT and becoming a master of insurance codes.) But beyond these barriers, all disabled people have to find their own solution to the biggest hurdle: how they want to handle daily interactions with the public. I believe strongly that how one chooses to deal with the often well-meaning but nonetheless rude and ridiculous looks and words is a personal choice. Whether you adopt a constant "take no prisoners" stance or a laid-back "go with the flow" persona, I call it brave to expend that energy to maintaining your self-respect. But even in the disability community we call one person “brave” for aggressively calling out an able-bodied offender, and someone else “weak” for just letting it slide.
We've seen a related social media war about the c-word. Seems like everyone wanted to define what’s courageous, and what’s not. If “courageous” means “proceeding forward in the face of fear,” then how does an outside viewer judge how scared someone is? An event like taking your chair into an inaccessible building is terrifying to one person, but a piece of cake to another. Does that make the person who attempts the trip anyway is less worthy of the label? I think of courage as the difference between KNOWING in advance what you’re up against, versus FINDING yourself in a place you never thought you’d be – and conducting yourself with bravery from there. I think the bravest thing of all is to embrace the life you have, the life you find yourself in, and the life you choose to lead. The tired argument that “bravery” only has one form or one degree, and pre-judging which actions are inferior and unworthy of that label, is the very definition of a closed mind. And a closed mind is the ultimate result of fear.
But let’s get back to those videos, and songs, and all the people who want to tell me how “brave” I am for just proceeding along the sidewalk in my chair like I had somewhere to get to. If you tell me I’m being brave for doing something YOU think you could never handle, it isn't a compliment to me. It’s showing YOUR ignorance. On the other hand, treating me with the normal respect you’d show to any other person in the world is doing me honor. My grandmother always said "we ALL have a box of rocks." Though all the boxes might look the same, no one but the person carrying it knows how heavy it really is. I want a world where no one feels the need to judge how difficult another person’s load is, and only show a willingness NOT to make it harder. To me, that is the confidence of knowing who you are, and choosing an audacious life.
“Disability is not a brave struggle or 'courage in the face of adversity.' Disability is an art. It's an ingenious way to live.” –Neil Marcus.