By Greg Smith
What did he say???
I just blurted out the words! While recording my podcast last night, a sentence left my tongue that I didn’t fully catch until I was done producing the show and listening to the final product for technical snafus.
“My disability is a constant enemy that I fight every day.”
Rip the needle off the record! Did Greg Smith — a man who preaches that disability is a natural part of diversity; a man who talks about disability pride; a leader in the promotional battle to get the truth about disability rights out there in the media… that guy — Did he actually say that his disability is a constant enemy?
My first thought at 2 o’clock in the morning was to re-record the segment because I knew how the choice of words could be misinterpreted. Many of my followers in the disability world would be outraged by that as a stand-alone statement. But I decided to let it speak for itself and not edit it out. Here’s why:
Without question, my worst enemy is my disability, muscular dystrophy. Equally stated, my closest friend is my disability, muscular dystrophy.
My worst enemy
There are times when I absolutely despise my disability. I have a neuromuscular condition that slowly deteriorates muscle tissue. Gradually, all my life, I have become weaker. This means that throughout my life, I have been losing abilities.
If you had it, you would understand that it happens so slowly that you barely notice it until one day, you can no longer do something you have been able to do your whole life. When you realize you can no longer do something, you curse the disability as an evil enemy.
My best friend
There are also times when I love my disability. It connects me to a rich culture of people around the world who have a physical or mental condition that substantially limits a major life activity. It is a fraternity that most non-disabled people wouldn’t want to join, but as a member, I can say that there is a definite sense of pride and a connection with others that is magical and unique. But what I love more than that is how much my disability motivates me internally.
Rarely does a day go by that I don’t find myself in the middle of a “crip moment.” That means that I’m in a challenging physical situation that requires concentration, determination, patience and creativity to overcome.
Usually there are two choices: I can either “man up” and do it myself, or I can call for help.
What I love about my disability is that it constantly gives me opportunities to exercise my determination muscle. Depending on my energy level and my schedule, sometimes in “crip moments,” I go into game-time mode and I decide that I will solve the problem on my own. During those moments, the disability is the evil oppressor who must be defeated. It’s personal.
These are situations where I am stretching the bounds of my abilities. I’m using creative resources and tools. I’m figuring out how to do the impossible. And when I triumph over the challenge, the feeling is excitingly addictive. That’s when my disability transforms from worst enemy to best friend.
“Crip moments” are when something is out of reach and I need to figure out a way to use leverage and momentum and rock my arm back and forth and then hurl my hand in the direction of the thing I need to reach… and coming millimeters short, resting, making another attempt, compensating for what went wrong with the last effort and trying to do it again, as many times as it takes.
Swinging my dangling foot from the wheelchair into bed late at night because I don’t want to bother my family to help me into bed is another example. Sometimes, that that takes an hour.
Another common example is when I’m sitting back in my chair and I need to lean forward. I don’t have the neck muscles to hold my head upright. So as my torso is leaning forward, gravity and my heavy head work in tandem to force my skull onto my back with my chin pointed up at the sky, which is a bad and painful position to be in. My solution is I literally throw my thumb into my mouth and gently bite down to allow my arms to keep my head forward for the transition.
“Crip moments” are when the coffee mug is too heavy to lift so I grab my right wrist with my left hand and pull both hands upward to raise the mug to the level where I can get a sip.
Having to face these daily battles has created a determination deep inside my soul that gives me the experience to have earned the title “The Strength Coach.” But I am not alone. There are millions of us out there who have the same best friend and the same worst enemy. To personify my disability would be to compare it to an old spouse or an old friend. Sometimes he or she makes you want to kill. Sometimes you appreciate and adore what that person does for you. Your worst enemy can be your best friend.