Let me put your mind at ease by reassuring you that there are no stupid questions. People are naturally curious about what is different, or foreign to them. Talking and answering questions about topics such as these, normalizes them; thus removing the ill informed negative stigmas attached to them.
So, let’s get to it, shall we?
Q: What is your disability? How did you get it? What does that mean for you?
A: Let me start off by saying that I love being given the opportunity to answer this question, because it gives me control over the narrative and the chance to portray how I wish to be seen. The only times I don’t appreciate being asked this question are when the question isn’t directed at me (I.e: “what’s wrong with her?”), or if the question is asked before the asker bothers to learn my name. Of course there are exceptions to every rule and chances are, I would answer the question regardless – let’s face it, I love to talk.
I have a disability called Spastic Quadriplegic Cerebral Palsy (CP). To simplify this as much as possible, I’ll break it down into 3 parts: Cerebral Palsy, Spastic and Quadriplegic – I think this order makes the most sense.
Cerebral Palsy: Think of Cerebral Palsy as a fancy term for a brain injury. This particular type of injury affects the cerebellum which is located in the back lower section of the brain and is mainly responsible for controlling the bodies’ motor functions (I.e: muscle movement and manipulation throughout the body).
Spastic: The “Spastic” part refers to the constant muscle contractures or tightness called, “spasticity” that is caused by the injury. In my experience, spasticity is definitely one of the worst parts of my disability because it can be painful, tiring and just plain annoying that my body doesn’t cooperate with me.
Quadriplegic: Being a quadriplegic just means all four limbs are affected – “quad” means four.
There are many different types and variations of CP with a wide range of severity and outcomes. I would probably be classified as having a moderate level of CP because my mobility is quite limited, my speech is very clear and my cognitive ability is unaffected.
Though this can also vary, the cause of my CP was being born before my brain, specifically my motor development, was completed. I was born premature at 27 weeks instead of 40 weeks. Why this happened remains unknown.
What does this mean for me? Here’s the gist.
CP does not go away, get better or worsen.
It is not contagious or hereditary.
I rely on my wheelchair to get around and caregivers for full assistance to do daily tasks such as dressing and bathing.
My mental and cognitive ability is the same as the average person my age.
I get fatigued faster than the average person.
I would not choose this for me, or anyone else.
I somehow make it work and live a great life.
Though there are many other facets of me, my disability and life with it to touch on, I think I’ve given a decent summary. If there’s anything I’ve missed, or you’d like to know, please contact me.
Lastly, I just want to say that the last thing I want is pity. I take pride in being able to share my story the way I want it to be shared. This is just part of my story, not all of it.