It started as a simple exchange between my personal care attendant (Madame J) and myself, while I struggled to move from my wheelchair to the garden path, aka "cripple's crawl-way." A yoga mat sits in between the tomatoes, corn, beans, sunflowers, squash, herbs and lettuce. The process is usually simple and uneventful:
I move the wheelchair to the front of the mat, shift my butt, and use my inability to stand upright to fall to the ground. My physical therapist calls it a "control fall," although I suspect she would be horrified to learn that I was falling on purpose since the method is meant to protect myself during an accidental fall. Whatever. It gets me to the ground and safely lands my butt onto the yoga mat, where I can piddle in the garden and pretend to pluck squash and pull weeds. Usually, though, I sit in the crawl-way and tell Nick (a neighborhood boy who helps me care for my service dog and work the garden) what to do. Often, a good funk is playing in the background and the fall is accompanied by a strong boom in my speakers and a sexy voice singing about love, loss, and the art of a fabulous B-O-O-T-Y.
On this particular day, I had convinced myself that I did not need to wait for Madame J or Nick to arrive, to ensure my fall was safe and I would remain uninjured. I felt strong, and my brain convinced my body, "You go girl! You're the best! You can do it! Why wait for help? You only need yourself!"
(I never said I was smart, right?)
So, I wiggled my own fabulous B-O-O-T-Y towards the ground and landed on my right leg and belly. My not-so-sexy vocals screamed over the music:
"God damn son of a bitch motherfucking OUCH"
Madame J: You okay?
Madame J (running outside): You sure?
Me (flopping on my belly like a beached baby seal): Yeah.
Madame J (helping me sit up): What did you do? DIdn't I tell you to wait until Nick came, before you work in the garden? Didn't I say--"
Me (interrupts): Don't start.
Madame J (checking me for wounds): Start what?
Me; Start, um...
Madame J: Start, um, what?
Me (yelling): DON'T MOCK THE CRIPPLE.
I stopped, shocked at myself. She stared, trying to process my words and their meaning. Then, we both busted out laughing, giggling uncontrollably for a good 10 minutes. Madame J has worked with me for over 18 months, since the day I returned from surgery and spinal cord injury rehab. We have reached a point in our relationship where we finish each other's sentences. She has always, ALWAYS respected my decisions and helped me, unconditionally. Up until that moment in the garden, however, neither of us has laughed-out-loud over my physical challenges and my mental games.
You see, I am slowly becoming paralyzed from the neck down due to inoperable tumours compressing my spinal cord. I spend most of my life in a wheelchair or in bed. I have some movement in my arms, abdomen and legs, but my autonomic nervous system-- that part of you that controls your heart, your kidneys, your lungs, your blood pressure, your stomach, your innards, even your tears-- struggles to work. When I float in a swimming pool, my head is discombobulated from the rest of my body because I can not feel my limbs and torso. The seizures dull my mind, and the constant, debilitating pain reminds me of my mortality.
On the day I'd first yelled, "Don't mock the cripple!" I probably meant to use the word "mock" to mean, "ridicule." The common definition says:
to attack or treat with ridicule, contempt, or derision.
to ridicule by mimicry of action or speech; mimic derisively.
to mimic, imitate, or counterfeit.
to deceive, delude, or disappoint.
I learned, however, that the word "mock" can also mean:
to challenge; defy
What if I had meant to say "stop defying me!" when Madame J had (rightly) questioned the decision I made to fall without waiting for help. What if we start to use the phrase "mock the cripple" to actually mean, "challenge the cripple?" What if I spend some time writing about those moments in my life where I have been mocked-- in negative and positive ways-- because of my crippledom?
Why not? If you don't like it, you can always leave. I am not a warm-and-fuzzy human being. I do not look for the good in humankind, including myself. I purposely use the word "cripple" because it carries shock value. The word is not pretty, and it refuses to be socially acceptable and politically correct. It carries negative meaning and usage that needs to be confronted. What better way to confront the meaning than to purposely use it to describe myself and my experiences?
Heh. Something to think about, n'est-ce pas? If you decide to stick around, then welcome, dear internet. In the words of Margo Channing:
Fasten your seatbelts, it's going to be a bumpy night!