Spirituality and Disability

Making your way in this crazy world can sometimes seem damn near impossible. When you have a disability you often […]

Making your way in this crazy world can sometimes seem damn near impossible. When you have a disability you often times find yourself weighing what you may want to do against what you’re able to do. It’s a constant battle, pitting your own soul against reality. Even if you don’t believe in kismet—if you believe that we determine our own destinies through our behaviors—you have to believe that every response we get in life is in direction proportion to the preceding choice(s) we made. The age-old theory of relativity says, “for every action there is an equal and opposite reaction.” Of course, thinking about that concept ahead of time only causes us to second-guess ourselves before the fact in every decision we make. The thing we need to do is believe in our abilities instead of dwelling on our limitations, and take some risks, putting a lot of faith and stock in those abilities. I know so many people who stay in places in their lives because they’re afraid of stepping outside their boxed comfort zone. Bad relationships, dead-end jobs; people swallow these pills everyday because they’re afraid of the change to be caused by stepping outside the boundaries imposed on them by those situations. But sometimes the only way to look at a situation—any situation—is to look outside the box.

This column kind of contradicts everything I’ve stood for since I started writing for Access Press more than a year ago. But I should go on record by saying 99% of the time I try and practice what I preach about in my columns; standing up for yourself, reaching further than you thought you could in an attempt to overcome limitations, showing the world that people with disabilities can and do perform well beyond their assumed abilities everyday. But there are times when even I can’t ignore the simple truth that I am handicapped. Most of the time I can pretty much brush it off like the bite of a mosquito, thanks to my friends and colleagues and a surprising amount of societal support. I wasn’t kidding when I wrote recently that the disability community is very much loved by those who advocate for it.

The recent Charlie Smith Award ceremony is the truest testimony to this claim. The number of attendees was “unheard of for a first-time fund-raiser,” according to the staff at the banquet hall we rented. This made us extremely proud. It not only told us that we had more than our alleged 11 readers, but that those readers were showing their support by their monetary donations and their time. That evening, I was one of the elite who had the privilege of wearing an Access Press staff badge, and I’d never been more proud to be a member of a minority community.

Then the other day I had an experience which caved my entire world in on me. Something that seems so utterly insignificant in the grand scheme of things, but which was, and is, absolutely consequential to my daily survival. It reminded me that I’m not 100% independent, as I think of myself most of the time; that I’m 100% dependent on one tiny little assistive technology device, called a button hook, to button my shirts. It’s just a simple wire loop attached to a wooden handle. I push the loop through the button hole, hook it around the button and pull it back through. A simple invention, but a true stroke of genius. And there isn’t any other device I absolutely need to get by and live a normal life. But this simple little contraption of wood and metal … without it I am limited in the kind of clothing I can wear.

To know me, you realize how addicted I am to clothes. I’m constantly on the prowl for the next snappy little ditty with which to dazzle the world. My shrink and I discussed this at length years ago, when I became extremely depressed about only winning first runner-up for Best-Dressed in my high school senior mock-elections. My love of nice clothes bordered, and still borders, on obsession. He described me as an overachiever—in every facet of my personality. From academics, to my work ethic to my wardrobe. I have this irrational belief within my head that I need to be twice as good as the average person to prove to myself (and everybody else) that I’m equal. Of course this is tied to my disability. My feelings of personal inadequacy stem from very deep-seeded insecurities about my physical body and its imperfections and limitations. I know it’s completely psychological, that I could get over it if I really wanted to work on it. But quite frankly it’s not really something into which I’m willing to put a lot of energy. I can think of a few, much better things to focus my energy on. I’ve resigned myself to the fact that this is just the way I am …

… Until the other day when my button hook broke. B-Day, I call it (B for button-hook—get it?). As I was getting myself dressed, I began to button my shirt and the wire slid right out of the wooden handle. I exclaimed out loud, “What the hell am I s’posed to do now?”

Ultimately I realized I had a spare at the office, and that I’d be going to my Occupational Therapy appointment later that afternoon so I could pick up another button hook from the “toy store,” as I affectionately call the assistive technology shop at Abbott Northwestern. But my issue at the time was that a “normal” person would just be able to get dressed and go to work. Snip, snap. No questions asked. No muss, no fuss. And here was I, my little handicapped self, suddenly feeling extremely inadequate and incapable. Stepping out the door and having my shirt unbuttoned for even as long as it would take me to get to the office was an absolutely traumatic concept for me. What if someone saw me looking less than perfect. I was beginning to change my outfit, standing in my closet—“If I wear this shirt, than I’ll need to change into these pants…”—when it occurred to me how ridiculous my train of thought was at that moment! Just get in the car, button the shirt at the office and pick up a new one while you’re at therapy!

A couple months ago I wrote about embracing yourself and your disability. This month I learned a little more. Sometimes that embrace needs a little adjustment or tightening. I also realized that being handicapped sucks! But guess what? It’s okay to feel that way sometimes. Like I said, most times I just shrug it off as though it were a minor irritant. But in reality it’s a huge monkey (gorilla) on my back; a demon I actually have to face. And the real interesting point to this column is that, as long as I’m aware that it’s okay to hate being disabled, the easier it is to accept it and go on. This is the time of year to dwell on what we have and share with others who may not have as much. All things being equal, I know I have much more than I don’t, and sometimes I have to stop and be thankful for that. My partner asked me what I wanted for Christmas. I told him at the time I didn’t know. After writing this column, I now know what to ask Santa for.

Happy Holidays and Shine On!

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