Words. I am surrounded by thousands of words. Maybe millions. Blizzard. Facade.
Lunar. Adolescence. Courtesy. Feathered. Poison. The list goes on and on and on.
Contrary to popular belief, I have thoughts, my thoughts have words, and
Words have always swirled around me like snowflakes - each one delicate and
. . .
Girl. Black girl. Black girl with Cerebral Palsy. To the world, this is it. This is all
Like the moon, slowly shifting from a vague outline, to a looming, milky white,
Heat in overtime for the first time in both of our lives, at the age of four. I was angry
Now that I am a preteen, my moon is nearly full, and I am equipped with eleven
Cerebral Palsy can be defined, having Cerebral Palsy does not define me. I just wish the
Life is an endless roller coaster of failed communication. Each drop or turn
signifies an unsuccessful attempt to tell my loved ones, my doctors, my teachers, and
the world, that I know what’s going on, that I understand the ups and downs of life, that I
am an intelligent being. Each loopty-loop, and gut-wrenching drop is a disruption to my
seated life by either an outburst, or a complete shutdown of my mind when I can no
longer take the insinuations of retardedness. The worst drops, the drops that make me
feel like I’m about to pee-out my stomach, or at least how I think they would make me
feel - evidence gathered from watching Despicable Me 2 in 3D last week, are when I
have outbursts in response to who people who are supposed figure out how to get me
off this never ending ride, who are supposed to understand me, but don’t.
Dr. Mitchell, the pediatric neurologist of Philadelphia, is supposed to be the
attendant who unfastens my seat belt, and lets me off of this ride of silence. He’s
supposed to know enough about the roller coaster, about Cerebral Palsy, to make it
stop. Instead, he’s an ignorant “able-bodied”, who emphatically shouts, “Tremendous!
Stupendous! Marvelous!”, saliva spewing and blood rushing to his already rosey-red
cheeks, when I stammer, “Buh”, at the sight of a blue card. No I didn’t just get into
Harvard on a full ride scholarship, sir, I think to myself. Please calm down. I’ve known
my colors since I was two years old. Even though Dr. Mitchell’s been earning his
degrees for a nearly a decade, he will never be smart enough to see inside of me.
Kid. I want to be a kid. I want to chase my friends on the playground, and run
down the hall to get to my desk, just before the bell rings. I want to throw food in the
cafeteria, while sipping on juice boxes. I want to slide on icy patches in the winter, and
stomp in puddles in the spring, then get yelled at by Mom and Dad for coming home
muddy and stinky from a full day at school. Instead, I get yelled at for making a fuss
when my parents talk to each other about me as if I’m not sitting right there, listening to
their conversations. Instead they send me to bed at four thirty in the afternoon for
throwing a fit when they lock my wheels into a stagnant position facing the TV screen to
watch Sesame Street on replay for the rest of the evening. Instead I call them Serayah
and Derek — if they don’t respect me, I don’t respect them.
I’m locked in a cage with no door, no key, and no way to tell someone how to get
me out. Serayah and Derek Hooks do not know what it means to be physically disabled
but mentally adept, and neither does the rest of the world. From my mother, I get coos
as if I’m the unborn fetus in the womb of a woman at her baby shower. From my father,
I’m scolded as if I’m the misbehaving dog that belongs to a flustered pet owner. From
the world I get stares. No one even bothers to ask me my name, like it's not important or
something. It is. My name is Naomi Hooks.
“Honey,” Serayah tries to get Derek’s attention as he reads Sports Illustrated.
“Does Naomi want to watch The Incredibles again?” she asks, as she spoons Annie’s
Shells and White Cheddar Mac and Cheese into my mouth. “Oh yes.” Derek
replies. “Definitely Ser-bear. We stopped it last night just as Jack-Jack was exploding in
Syndrome’s hands. Oh that last scene is just so good. We better start the movie over.”
“You’re right Derek. She’s forgotten what happened by now.” Serayah asserts.
Conversations like that, conversations where I’m sitting in the same exact space
as my parents, but they don’t even try to engage with me, happen everyday. How do I
exist in, enjoy, and contribute to a world that I can only view from the inside of a cage —
never speaking or being heard?
. . .
“Emergency Alert! Dozens of children in the Tri-State Area have been
hospitalized with lead poisoning. Steer clear of Cynthia’s Alphabet Blocks. Most of them
have been recalled, but these dangerous play toys can still be found in some stores. I
repeat, Cynthia’s Alphabet Blocks are a threat to your children’s health! Avoid them at all
costs. This is Marcey Redhausse with Fox News. Tune in tomorrow morning at eight am
eastern for more updates. Up next, Charles Sandrey with news about the new baby
otter, Ohana, at the Philadelphia Zoo.”
The screen changes to a commercial for Scrubbing Bubbles just as Serayah
unlocks my wheels, pushes me out the back door, down the ramp next to the cement
steps, then loads me into our van, and finally straps me in. I don’t care that the strap is
way too tight, all I have on my mind are the words of the overly made up, Marcy
Derek, Serayah, and I drive to the Walmart Super Center on State Street. When
we arrive in the toy section, I see them on the top shelf: a bag of brightly colored, plastic
blocks. This is my chance. This is my moment to save a child, potentially multiple
children, who could end up hospitalized because of these poisoned blocks, my moment
to be a contributing member of society. I point to them and screech. “No, Naomi.”
Serayah whines in an octave two times higher than normal. “You don’t
need those. You have plenty of toys.” I jerk my right forearm back and forth, emphatically
gesturing to the blocks while kicking my feet. “No!” Derek says more forcefully.
“You are not going to have an episode on me this morning!” I don’t want the blocks. I
want to tell them they’re dangerous. I want them to tell somebody to get rid of them
before another child gets sick. But all I can do is scream and point and kick. All I can do
is sit there making useless noises, as if my only purpose in life is to annoy my parents, to
annoy the world. I feel smaller than ever. How can I expect to save anyone, how can I
expect to contribute to the world, if I don’t have a voice?
. . .
The morning after the Walmart incident, Derek switches on the thirteen-point-
three inch TV in our kitchen. As he spoon feeds me applesauce from the plastic Mott’s
container, Marcey Redhausse, the blonde haired, reporter issues another report about
the lead-painted blocks. Derek stops feeding me and turns his head back and forth from
me, in all of my hot pink pajama and apple sauce dribble glory, to the TV, where the
woman is emphatically telling the camera to steer clear of Cynthia’s Alphabet Blocks. His
eyes widen. I can see the gears turning in his head as he realizes what I was trying to
tell him in the supermarket. “Serayah,” he beckons my mother over in a hushed voice.
“Look!” Serayah’s pupils dilate, as she comprehended the merit of Marcey
Redhausse of Fox News’s words. It’s happening. They’re connecting the dots between
my tantrum in the Walmart Supercenter, and the report that ten more children were
hospitalized last night, with brightly painted alphabet blocks as the culprit. Serayah and
Derek Brooks, the parents of an eleven and a half year old girl with Cerebral Palsy, are
beginning to truly understand the extent of their daughter’s capabilities. Maybe there is a
door to my cage, and a key to unlock it too. And maybe, just maybe, they’re figuring out
how to free me.
. . .
Patience is bitter, but the fruit is sweet - Aristotle
“Happy Birth-day to ya! Happy Birth-day to ya! Happy Birth-day! Happy Birth-day
to ya!” Today, June 14th, 2014, I am fourteen years old. As Mom and Dad serenade me
with the Stevie Wonder rendition of Happy Birthday, I think about what gifts I’ll find
hidden around the house. The gifts that make me the happiest are the stickers with
words written on them that Mom and Dad hide around our home for me to find, on my
own, by navigating my electric black and pink wheel chair across our hardwood floors
with ease. I find the stickers, then Dad pastes them on my Plexiglas tray that’s used for
both eating, and pointing to common words and phrases I need to navigate my life as a
teenaged girl — I need to go to the bathroom, I’m hungry, That’s so cool! How are you?
That’s my favorite one! Vanilla please! — I am limited to the vocabulary of a toddler, but
it’s better than eating and watching whatever my parents think I want, and being forced
to pee every half an hour when Mom’s alarm sounds.
First, I head across the house to the kitchen, Mom following close behind with a
video camera . Blizzard and Facade are on the kitchen table, Lunar next our fat Luna’s
food bowl. Next, there’s - , wait, what’s that box on the table? It’s wrapped in a deep
shade of orange wrapping paper, topped with a big blue bow. I point to, What, on my
tray, then, Is, then, That. Finally, the word Surprise, followed by the question mark I got
last year for Christmas. “Naomi,” my Mom begins with the biggest grin I’ve ever
seen plastered across her face, “That’s your new Medi-Talker.” Dad picks it
up and unwraps it. It’s a space-gray laptop with extra large keys, I mean extra large.
Probably three by three inches, perfectly tailored for my caramel colored knuckles to roll
over. “It’s a computer that will allow you to be heard,” Dad adds, with a sly
smirk on his lips, and a twinkle in his eye. All I do is stare at them smiling, which turns
into a little chuckle, and evolves into a maniac’s cackle. This is it. This is the door to my
cage, and soon it will be unlocked, soon I will be set free. Soon I will be heard.
. . .
Words. I can say thousands of words. Maybe eventually millions. I have thoughts,
my thoughts have words, my words have meaning, and the world comprehends
Mom and Dad spend three days typing in words for me. Nouns, verbs, adverbs,
and adjectives - thousands of them. We can prepare hundreds of phrases and
sentences and get to them with just a tap — Have you heard Rihanna's new song?
That’s what’s up! How did you do on the spelling test? — Ordinary words. Normal
conversation. I can even program the voice. I pick the one called “Asha”. It sounds
exactly the way I sound in my own head, exactly the way I’ve always wanted to the world
to know my voice — sophisticated with a touch of sass.
While Mom and Dad prepared lunch the second afternoon after I’d received the
Medi-Talker I’d officially named Asha, I continued exploring. “Bienvenue,” Asha
said in French. I knew that meant, “Welcome”. I pushed the button for German and she
said, “Willkommen.” I even found something that sounded like, “Huan Ying”, when I
touched the button for Mandarin Chinese. I stopped for a moment, and stared at the
board. It never fully clicked in my head that there are kids like me in Germany and China
and France — kids from all over the world —who need a machine to help them talk.
When my parents returned with Peanut Butter and Jelly squares, I used Asha all by
myself for the first time. At age fourteen and two days, I spoke my first words, “Hey,
my name is Naomi Hooks! What’s up?!”