Last Fall, around the anniversary of my accident, I thought that rather than recounting the things I’ve accomplished since breaking my back, which would basically be a rehashing of Facebook highlights, I’d go a little deeper and make a list of things that I’ve learned after 7 years as a paraplegic. I figured that if I could organize my thoughts into something meaningful, perhaps I’d feel like I’m still moving forward in life, as opposed to the feeling I often get; that I’m floating down some kind of river of forced retirement without a lot of purpose.
I started by scratching down anything that came to mind, and then narrowed down the list and put the ideas into some kind of order. The list turned out to be a little heavy, but I think that’s just representative of my mental state at the time. It also makes sense to me that it’s the tough stuff that I’m still working through that tends to clutter my mind; so hopefully getting it out of my head and into the blog will free up some space. My apologies if it comes across a little like “Deep Thoughts with Jack Handey,” but this is my world.
While it might seem a little rudimentary, I realized that the first thing on my list that I needed to sort out for myself (and as I’m sharing this with the world it’s probably not a bad thing to get out of the way for you either), has to do with word ‘disabled’. Specifically, I’ve had to acknowledge the power that I’ve allowed this word to have over me.
I’ve danced around the word ‘disabled’ since my accident, trying as much as possible to avoid using it as a way to define or classify myself. I always knew that I didn’t like it, but ‘being disabled’ was a requirement for things like insurance, a parking pass, or not being able to work full-time. Upon taking the time to really stop and think about it though, I realize that there is a direct correlation between the time when I allow myself to be defined as ‘disabled’ and the feelings of helplessness and depression that I struggle with. Words and labels are powerful. This isn’t news to most of us. But to go from the experience of benefiting from positive labels, to those that are harmful and full of baggage, is like getting a surprise punch to the gut.
Before my accident, I would have been happy describing myself as tall, blond, active, reasonably intelligent, hard-working and fun. All of those are either neutral or have a positive connotation; no big deal. Upon breaking my back, even though I was still blond, active, etc., a new master status was thrust upon me and constantly threatens to overshadow everything else, and that is, ‘disabled’. My classification is paraplegic and the most visually distinctive thing about me now is that I’m in a wheelchair. Damn.
I think it’s funny how my brain works. Even just saying the words in my head “I’m disabled,” sucks the life out of me. I lose all of my motivation to go and accomplish shit. I also laugh at myself because I realize that it’s my own baggage that’s bringing me down. A lifetime of equating being disabled with being broken, and being less than able-bodied, is proving extremely difficult to redefine in my head, even though I know many people with disabilities who are incredible in countless ways, and even though I’m now one of those with the disability.
Before my injury I never took the time to learn about the specific challenges that those with disabilities have. I was busy with my own life and concerns, so like many, I put everyone with a disability into the ‘disabled bucket’. It was easy. It was lazy. Now that I’m the guy with the disability, I’m forced to address this myopic view of the word, because it’s my personal well-being at stake. Through all this contemplation trying to figure out what makes me tick, I’ve concluded that I can’t think of myself as ‘disabled’, but rather, I need to think of myself as ‘having a disability’. I have a spinal cord injury. I have shit that I need to deal with on a daily basis, like watching the clock to manually manage my bladder and skin, or to pre-emptively figure out the logistics of the physical environment if I’m going somewhere new. It sucks, but I can handle it. These are challenges that I routinely have to overcome, but they are not me. The fact that I can deal with them and do other things makes my other achievements more meaningful. I’m not broken as a person, my day is just a little more difficult than most.
I was thinking about those who have a broken leg, or who are fighting cancer. We don’t say “they are broken” or “they are cancer”, we acknowledge that these conditions are something that they ‘have’. Yet society lumps everyone together into a ‘disabled’ category. It’s tidy. I understand why the ‘disabled’ check box is needed on forms and why we have disabled parking spots. I just refuse to put myself in that bucket anymore. And, to the best of my ability, I won’t accept others putting me into that category.
Looking back, I’ve been feeling this way for a while. I remember putting the M-Dot (Ironman symbol) sticker on the back of my wheelchair the day after I completed Ironman Louisville. Inside my head I think that the sticker does a nice job of contradicting the appearance of the wheelchair. If anyone looks at me and thinks to themselves “poor disabled guy,” I hope they see the M-Dot and realize that I am a serious athlete. If anyone is feeling sorry for me, I’ll challenge them to a day of swim, bike and run, and then we can decide who should be feeling sorry for whom. Maybe it’s a smart-ass and pompous way of thinking, but it does make me feel better.
So to wrap this up, one of the big things I’ve learned since breaking my back, is that words and symbols contain all the power that we give them. And that’s the key in all of this. I realize that it’s 100% up to me to determine what meaning I give to any word, regardless of what society or the world thinks or proclaims. I make that decision and I benefit or suffer from doing so. Even just reminding myself that I control this process is empowering, and this can dramatically improve the quality of my life. This blog will help me do that.
Allowing myself to slip into a group called ‘disabled’ by society might provide some relief of expectation and accountability from others for a time, but it ultimately leads me to being miserable. Yes, I still need that disabled parking pass. But I refuse to be a victim of a spinal cord injury, I have to be a fighter. So in the same way that I will not adopt the label ‘disabled’, I’m hoping that people I care about in life will decide to see and refer to me as just another guy who is kind, smart, funny, athletic, etc., and if for some reason it’s important to the conversation, I can be referred to as having a spinal cord injury, as in…“he does all these things, oh, and by the way, he’s paraplegic”! If everyone can take the time and effort to at least question the buckets that they put people into, I think we’ll be making the world a better place.