I don’t know too many people who, affectionately, name their body parts.
No, that wasn’t meant to be a provocative statement pointing to the clever minds of men and women who are quick on the trigger to celebrate the biological gifts, the differences, that make up femininity and masculinity.
Rather, the far less spurring end to that opening sentence is: except for me. I was a snot-nosed toddler on her way to being a first-class smart aleck the first time one of my tiny hands was given a new tag.
I was also a sassy-pants three-year-old whose sweet tooth would ache anytime chocolate was near. I knew confidently well, without help from a red-crayoned map or a nose-powered radar, exactly where the Oreo cookie jar could be found. There it was, perched high on the kitchen counter, like some blue sapphire treasure chest, just waiting for me to try and get my sticky fingers all over it.
“I’ll fly you,” my agreeably sweet dad would say, any time I needed to be picked up and carried here or there. I didn’t care how; the only concern was getting my little booty seated squarely on that linoleum countertop and my chubby cheeks smeared with chocolate cookie dust.
Fly Me to the Moon
I’ll fly you. Those three words meant careless freedom. No matter how fleeting, every time my feet escaped the footrests, I was no longer restricted, but released from the barrier of my wheelchair. My pocket-sized hands wrapped around his hulking neck and shoulders, it was all I needed to feel my dad’s muscles and know he was strong and stable; with his body as a careful guide and dependable helper, nothing could hurt or restrain me. I also knew, from his careful hand and the gentle half-smile that he gave whenever he looked in my direction, he had a sizeable soft spot just for me somewhere under his sturdy exterior.
A curious child, I was incredibly observant. It wasn’t long before I learned what made people tick; the certain actions or words that made people respond, particularly in ways benefiting my candy-coated, chocolate-covered wants and needs. (Hey, maybe instead of calling me a once-upon-a-time manipulative brat, we can go with career-long creatively crafty kid in search of sweets? Ok, good. Glad we got that straight). I knew enough to understand that my particular variety of cheeky charm and shameless sass was just about all I needed to get my way.
A dreamy tilt of my head plus a wide-eyed grin at my dad equaled a free flying lesson to the top of our kitchen’s highest peak, in value at least. Once I landed, I could finally open the blue stained-glass treasure chest and dig around until I found the perfect chocolaty coin. But not without paying for my ticket on dad’s Airway Express.
I Got a Cookie, I Got a Cookie, I Got a Cookie…Hand Hand Hand Hand
“Use your cookie-hand, Squirt,” affectionately translated to, “pay up, Kiddo.”
He was referring to my right hand, the one affected by my cerebral palsy diagnosis. Weaker than my left paw, its movements were also much less smooth and way stiffer. Getting my fingers to bend and grip anything worth holding onto was just about as easy as trying to control a slimy, slippery fish in above-water duress.
Simply, and without a colorful marine animal metaphor, my birth-given condition means that the muscles in my body have a tough time talking with each other. Like bad cellphone reception in an elevator between floors, the messages passing between my brain and my body are garbled by sticky static (what can I say – similes and metaphors are my milk and cookies – I eat ‘em up). Physically, that manifests as minor to major – depending on the day – trouble moving and controlling my ability to stand and balance.
Turns out, top-notch muscle tone, coordination and control is pretty high up on the list of things you need in order to stand and walk, without fear of falling. Enter a sexy set of wheels.
The big, brightly colored power wheelchair acts as a chariot for the pair of my small stems, whose muscles are wound so tightly that they’ve never known the feeling of full extensions, even after surgery to free them from a spastic hold. There certainly isn’t much I can do to camouflage the rigidity of my right arm and hand, either.
Have You Seen My Broom?
I was a watchful tot; it didn’t take much staring for me to realize how differently my body moved compared to the other half-pints in my preschool class. I learned that if I kept the movement of my right hand minimal, then it didn’t look so scary. But if I tried to use it to grab some blocks or a crayon or even animal crackers during snack time, then my right hand looked like the crippled, knobby hand of a wicked witch trying to grab her broom.
I didn’t want to scare anyone or be different than the kids in my class. So, I didn’t use my right hand. I kept it hidden, tucked under the table in my lap. Instead, I learned how to use my strong left hand for everything, especially nabbing cookies. God forbid, the witch’s black cat escapes the bag, letting everyone know: I am disabled.
I don’t need to be disguised as a grumpy, old witch to fool anybody into thinking that I feel anything but distain for that word, disability. No, this is raw, real, no-face-painted-or-masked, me speaking: it’s a word rottener than that nasty, poison-filled apple being tossed around by a fruit-hustlin’ hag.
This may be a bit of a stretch on a metaphor about a princess’ nemesis, but stay with me for a hot minute.
Think about that blood-red apple: on the outside, it’s a simple fruit with sweet flesh. In truth, the apple was opposite simply sweet. It was sinister trick-bait, used on a naïve, unwitting person, moving them to believe that the thing – in this case an apple- they saw in front of them was exactly as it seemed.
But, that perfectly crimson crop was unavoidably more than it seemed. Its outer-layer gave way to a small, insignificant fruit, but at its core was packed a poisonous punch.
Don’t get me wrong, I’m not trying to compare disability and it’s implications to a poisonous tree-fruit, but I am trying to creatively illustrate that like the witch’s apple that was innocently unassuming, disabilities (of the physical variation, to be clear) and how they manifest and appear to other people can be more deceiving than a blood-red apple.
Dictionary Say What??
First, without being up close and personal with a 3-D rendering, all you have to do is read the 2-D word. There on the dictionary page, a physical explanation absent, the word disability stands, effortlessly declaring less-than. Asserting that anyone born to bear this label is missing a handful of essential doings and understandings from their makeup. Announcing that anyone whose trials and tribulations are defined by this word are living in the space of mediocrity.
Says who. Merriam Webster, for one. Dictionary.com, for two. According to these sources, disability is: a lack of adequate power, strength, or physical or mental ability; incapacity.
Shall I continue? These supposed educated sites also say that disability:
1. Prevents a person from living a full, normal life or from holding a gainful job.
2. puts one at a temporary or lifelong disadvantage.
I smell heaping piles of bullshit. I refuse to pick up this load of crap; an us vs. them mentality.
That kind of thinking is dangerously toxic. Equal to the power of invisible chemicals, baneful thoughts burn through bridges built on equality regardless of commonality. Compassion breeds connection; without it, endless opportunities for comprehension, appreciation and admiration are lost.
The ‘you and me are not an us’ mindset is an honest interpretation. The tendency to put people into labeled boxes because of certain physical characteristics or mannerisms is a learned behavior. Judgment is not pre-meditated malice, it is uneducated ignorance.
The more we don’t know or understand someone or something, the more that person or circumstance is feared. The most common response to fear is turning away, separating ourselves from the source of discomfort.
The impulse to fill our heads with false ideas or explanations, making the thing – in this case, a physical disability – we don’t understand more recognizable is also a popular coping mechanism. In other words, throwing a blanket over the thing that scares us and calling it something else in order to feel more in control of our surroundings – that’s stereotyping.
I am a woman and a lifelong wheelchair-user. I am acutely aware that stereotypes about those two unchangeable, God-given lots will continue to lead other people’s opinions about me.
There will always be some people who believe that because I am a woman or because I am differently-abled and use a wheelchair, I am somehow less-than, inferior. I drank that soul-stealing poison and believed the falsehood for too long. Today, I’m working to change my own perspective and use the unkind comments, ill-timed questions or stares that linger a little too long as motivation.
Growing in Gratitude
My motivation is education and awareness; fostering the positive changes that can happen when we allow ourselves to be taught by other people, learn lessons from their Book of Life and grow through gratitude for differences.
It would be better than great if the Book of Words, our dictionaries, offered more realistic teachings about disabilities. It would be so much more illuminating if the official definitions of disability were more factual, more like the people who have them: empowered, engaged and equal. After all, the negative opinions or damaging stereotypes are nothing but the absence of facts. The fact is, people with disabilities are just people. Sounds simple, right? It should be, but messily slapping labels on people based on their outer shell can be an easy habit to build and an even harder one to break. I know.
The first time I was approached by another person with a visible disability, I was frightened. Before you go thinking I should know better and I should practice what I preach, I was only five-years-old and sheltered from the colorfully collaged world around me.
The stranger, a man, spotted me at the airport gate. He weaved his mammoth wheelchair through the waiting crowd to get to me. I sat there, frozen in my much smaller, less intimidating chair, trying to shrink behind my mom.
He said, “hello”, and I was startled. The sounds, similar to the staccato, robotic cadence of ET, were unlike anything I’d heard before. He didn’t speak with his mouth – it was blocked by a breathing tube -instead he communicated with a small computer mounted on a tray attached to his wheelchair’s armrests.
There was some kind of a magic wand – what it seemed like in my Disney-obsessed mind – he controlled with sharp movements of his head to activate the buttons of his electronic voice box. His hands, small with fingers folded into the palms, looked like they probably hadn’t held anything in a long time. But with a tap here and a tap there on his masterfully-controlled speech device, he was able to string together words to form sentences that create entire conversations.
I don’t remember a single detail about the things he said to me. What I know for sure is that I was frozen in fear. I was afraid of what I didn’t understand, what I had never seen before – not even in myself. I came away from that interaction promising myself that I didn’t look like that, that I wasn’t disabled like him. I never wanted anyone to be afraid of me the way that I was frightened by an outgoing man in an airport waiting area. I never wanted anyone to be so intimidated by my wheels that they made a conscious choice not to approach me or engage with me.
In years following, I obsessively pored over every inch of my body, dissecting how it did or didn’t move. I tried to be calculated in how I sat or held my arms, especially my hands. In photos, I was adamant that not too much of my wheelchair could be captured, in case it distracted away from me.
I didn’t then, and I still don’t, want to be thought about as disabled. In my mind, I’m not. My body is not wrong or damaged; it’s beautiful. I am strong, intelligent, insightful, wickedly funny and capable of achieving anything.
I’m just me.
The thing is, the man in the airport wasn’t disabled or not disabled, he was just himself, too. I remember he had kind, bright eyes. I am willing to bet he is also compassionate and smart and funny. He wasn’t trying to scare me, he was trying to teach me.
The man in the giant electric wheelchair with a robotic voice wanted me to learn a powerful lesson as early as possible: never be afraid to show up and be exactly who you are. In a world not made for you, make space – and fill it all the way up.
It’s important for me to honor his teaching and remind you to believe in yourself and embrace who you are without apologizing. And for goodness sake, never read the dictionary.
Get Your Tires Pumped
I’m still learning to willingly and enthusiastically accept myself, even today. About a month ago I started physical therapy. I haven’t done any kind of PT in almost 10 years. It’s hard to do the work and it’s even harder to come face-to-face with my spasticity and rigidity, the things I don’t appreciate about my body.
The first day I met my therapist, he called me out for apologizing. I didn’t even realize that I was apologizing for everything: how slow I was moving, how stiff my legs are, how difficult it can be for me to move my body in a certain way. At one point, he requested I do a new exercise. Absentmindedly, I told him I couldn’t move correctly. He looked me square in the eyes and said, “no, it’s not can’t. It’s not yet.”
I gave him a skeptical grin while remembering what my mom used to say to me. “Can’t is not part of your vocabulary,” she’d say, pretty regularly. They would get along, I think.
Here’s another thing I know: the moments of my mom getting on me to think differently and loving me tough or my dad encouraging me to use my cookie-hand or my physical therapist reminding me to never give up were never punishments. These instances are lessons in having pride in myself and in my body.
No one has ever said they have enough cheerleaders.
Our own drive and focus is important to dream-catching and self-loving but so is a group of like-minded go-getters and tire-pumpers. Go find your own cheerleaders; the people who, while you are working to polish and shine-up your own rides through life, consciously pump-up your tires, helping you go further.
Now, if you excuse me, I am going to go eat some chocolate chip cookies – with my cookie-hand.