When “normal” people see someone who is disabled going about their life facing the numerous obstacles that are placed in their path, one of the more common things people say is “They are so brave.” This is such a common reaction that one of the social barometers of our time, “South Park,” even poked fun at it. Personally, I don’t like it when people say this to me. It is not that I don’t appreciate their recognition of how hard my life can be. It is also not because I don’t think I am brave. What I take issue with is why they think I am brave.
Once you make the decision to live life in the fullest, best way that you can as a disabled individual, you have to accept certain realities. You have to accept that at times you will be a spectacle, and that others will stare. You accept that some things will take you longer and be more difficult for you than for others, but you will accomplish your goal. And you even accept that you will be reliant on the help and kindness of others a lot of the time, thusly sacrificing your autonomy, modesty, and privacy. You accept all of this, and so much more, so that you can experience as much of life as you possibly can. In my opinion, living life having accepted that this is how life is, does not take courage. If you are going to be a part of the world, you have to accept these sorts of things. You don’t have a choice, because you cannot change things like this. You have to go through it whether you are afraid or not. This doesn’t mean that I think living life confined to a wheelchair is not something to be admired or that can inspire and motivate people (I would not have started Roll Models if I did). It takes an enormous amount of heart, spirit, and effort to live this way, but I don’t think it takes courage. To me, courage is when you are faced with a choice, and you choose an option that is scary or more difficult because it is the best thing to do. It is the choosing that is courageous.
A few years ago, I started having a soreness in my left shoulder. I woke up one morning and it hurt. I figured I had just slept on it wrong, and that it would go away. Over the next week however, the soreness got gradually worse and started moving down my arm. After a month, the pain in my shoulder was so bad that I couldn’t even move my arm without intense pain. Getting a shirt on was pure torture. On top of that, I had lost feeling in much of my left hand. Obviously, something beyond sleeping on it wrong was at play. Over the next 6 months I saw 4 orthopedic specialists, a neurologist, 2 pain specialists, and had every medical test known to man in an attempt to figure out what was wrong (Eventually we did, but that is not the point of the story). During this 6 month period, my life was not fun. I hurt constantly, got almost no sleep, and had to go around wondering if I was going to lose my arm or live in pain (or worst of all, both).
I got to the point where my will, my spirit to fight, was all but gone. I was so scared of the pain and the not knowing what was going to happen to me. In this state of depression, I told my closest friend one day that I was considering giving up. I told her that I just didn’t think I had enough “gas in the tank” to cope with one more thing. I told her I was thinking about putting myself in a facility where I could get heavier pain medication, and just spend my days pumped full of narcotics waiting to die. Basically, I was terrified that I wasn’t strong enough to handle this new obstacle. I was facing a choice of whether I was brave enough to keep fighting to live a full, meaningful life.
After saying this, I looked up at her, this woman who knew me better than anyone, and she was crying. She was one of the strongest people I’d ever met (still is), and I had never seen her cry before, but she was in tears. Choking on my words, I motioned her over to me, and we hugged. Even though I have no memory of what was said the rest of that day, I will never forget how that moment we shared felt or what it taught me. Seeing her break down that way, because of me, and feeling the love we shared in that state of complete vulnerability, gave me an immediate and much needed reality check.
I had forgotten why I fight every day, every minute, to live the happiest, most successful life I can. I had lost sight of where my courage comes from. It comes from those around me and the experiences we share. It comes from the love and support we give each other. It comes from the smiles, the tears, and the compassion we experience with one another. It comes from knowing that if I am brave enough, if I can just find the courage to keep fighting, that I can have an impact on everyone’s life I touch. I can change the world by being “worthy of my suffering,” worthy of my fear. That is courage. To choose to fight and suffer, when it would be so much easier to throw in the towel, that is courage.
The next time you see someone who is disabled, think about this story before you start assessing their courage. Take a moment to think about why and how they are brave. Think about how their courage has now impacted you, and the ripple effect that can cause. Maybe ask yourself, “If I were in their place, would I have the courage to fight?”