For as long as I can remember I wanted to be normal, or at least be exactly like everyone else. The truth is, I’m not normal. Not in the slightest. I have been called an “inspiration,” “amazing,” “a miracle” and even “incredible.” The list goes on.
Twenty-three years ago, I was diagnosed with cerebral palsy.
My parents used to tell me, “People will always be curious and uncomfortable with what they cannot understand.”
Well, it is 2020 and I think it is time people should start to understand more about what makes them uncomfortable.
The exact definition for cerebral palsy according to the Centers for Disease Control and Prevention is this: it’s a group of disorders that affect a person’s ability to move, maintain balance and posture. “Cerebral” means having to deal with brain, while “palsy” means muscle weakness.
To further complicate things, there are many different categorizations of cerebral palsy.
In my case, I have spastic cerebral palsy. According to the C.D.C., it affects about 80% of people diagnosed with cerebral palsy. Spastic cerebral palsy affects one side of your body, and in most cases, it affects the arms more than the rest of the body. Spastic cerebral palsy can also cause trouble walking because of tight hip and leg muscles.
In my own words, it is basically like a stroke where one half of my body does not work as great as the other half of my body.
That is my disability in a nutshell.
There is a lot that comes with a physical disability. It can be incredibly frustrating; more than people realize. I deal with chronic pain and muscle spasms. Ice packs, heating pads and Tylenol are pretty much my best buds.
I get tired easily. Cold weather and stairs are my enemies.
I try not to let my disability control my life, but there are times where it does take over and I just have to handle it the best I can. I loathe the moments I cannot control, but within those moments, I wish others could know or understand what people like me are experiencing.
So here is what I really want people to know.
With a physical disability, I sometimes believe that is all people see. They do not see me as a human soul; they just see the disability. Occasionally, I am treated differently because of it.
I totally get it. Seeing someone walk differently than the average person must be fascinating. But please, do not stare. It is weird. I can tell when people stare and it is extremely uncomfortable.
It is almost as uncomfortable as the look on people’s faces when they realize I know they have been staring.
When I am out and about, folks ask a lot of questions; mostly if I am okay. When people ask me this, I think I have not noticed I am bleeding or seriously injured.
I am okay; I swear!
Responding to questions about my disability can be extremely awkward. I am never sure how people will phrase their questions.
I once had a girl straight up ask, “What is wrong with you?” I have also had someone ask me what my “ability” was because, they found it rude to say “disability.”
While others may see me as this incredible source of inspiration or an amazing person, I do not. I have never considered myself any of those things, and I probably never will.
Some folks then feel the need to apologize right after performing their intensive and intrusive line of questioning.
This never makes sense to me. Sometimes I just want to say, “Why are you sorry? You already made this whole conversation weird!”
That would probably just make them feel worse. My point is, get to know me a little bit before asking about the disability. It makes it less weird.
I have adapted my lifestyle to fit my needs. I can do almost everything else anybody else can do. I have also learned the courage to know my limits and to tell others what those limits are.
At the end of the day, I am a 23 year-old college student trying to figure out life and how to balance everything else in-between.
Getting praised for going to school and doing other daily tasks is just weird. If others are not getting praise for going to school and to the grocery store, then why should I be?
Easterseals, a disability advocacy group, once stated, “The worst thing about a disability is that people see it before they see you.”
I completely agree. I want people to see me. I want people to see the girl who loves writing, books, music and so much more. There is so much more to see than just a girl with a disability, and it is time people start to see that, too.