A balancing act, literally

This entry originally appeared on my disability blog, I hate stairs.

Some of the people that have, through the years, been charged with the task of being my care-giver, have not understood the underlying principle of how I work: my body is a complex system of weights and counterweights.

It is frustrating because I must always be in a position of balance to perform tasks (e.g., eating) independently. I have an unnofficial list of positions that I use. Eating fingerfoods requires a position I call “The Praying Mantis.” I stand my arms on the table with my hands propped against each other. It resembles a praying position. I have another position for eating more complicated foods that require a spoon or a fork. I have another for using my computer, playing video games, sleeping, using the restroom, driving my chair, riding in my van, and a host of other situations.

Now I know it’s probably picky to expect someone to have every position memorized, but I think some people I have worked with lacked an understanding of simple physics. The same people usually have trouble following short, specific commands (e.g., slide both elbows toward each other). Some parts of my body are “dead weight,” if you will. So if I’m wanting to stand my arms up in The Praying Mantis position, but my assistant doesn’t prop my arms against each other, they will fall. It takes the weight of each arm pushing against each other to hold them up.

Some of my balancing acts (e.g., eating chips with a fork) are so unusual that one of my friends has dubbed me the MacGyver of eating. I must admit, I’m proud of my enginuity. Sometimes, I wish I could spend a week in an occupational therapist’s office with someone who thinks like me. I might be able to figure out how to play the piano. I’ve written some music, but I haven’t been able to hear it played on a real piano.

To my attendants’ defense, most of them have been good. I know it must be difficult for someone with full use of their muscles to think the way I do. In that context, I suppose I have had some great attendants. But when someone can’t seem to use his or her common sense when helping me, it rubs me the wrong way.

Self-centered? Maybe. Wrong? I don’t think so.