It’s not news. I have cerebral palsy. It’s a result of my wanting to come into the world too soon. I guess I found my mom’s womb to be rather boring. (Was it the fact that there was no cable in there? Who knows?) So instead of waiting until my mid-December due date, I decided I wanted everyone to meet me in early October instead. I was ready for the world then, even though it wasn’t ready for me.
There were a few problems with my early arrival. My lungs were not fully developed at the time of my birth, which meant I literally could not breathe. This was in the days long before neo-natal care existed, and in the time it took medical personnel in the room to figure out what was happening and get me into an incubator, my brain did not get the oxygen it needed. As a result, some of my brain cells died. And once brain cells die, it is my understanding that there is no hope of reviving them. So, at the time of my birth, my arms and legs were not weak. It’s that my brain cannot make the connection to tell my body to work. The diagnosis came when I was a year and a half old.
My disability is what it is. Countless hours in my early days were spent in physical and occupational therapy where I had to be taught how to sit up, roll over and dress independently. Eventually, I learned to walk with canes, and for the majority of my childhood, I had some kind of braces on my legs. They weren’t any fun. And all the surgeries I endured as a kid were no picnic either.
But I have grown used to doing things at a pace slower than most, and in a series of steps. That is the only thing that works for me since I am never anxious to crash and burn. Making the transfer from my bed to my wheelchair or from my wheelchair somewhere else means that I have to concentrate and balance in ways that most other people don’t think about.
The concept that a life is a sum total of experiences has really resonated with me lately. It is because I have cerebral palsy that I have been able to dance and be crowned Ms. Wheelchair Kansas in 2007. It is also because I have cerebral palsy that I cannot drive and require the assistance of caregivers to do some of the most basic and intimate things in my life. The bad comes with the good.
Today is cerebral palsy awareness day, and I have reminders of it all over Facebook because I have lots of friends with the same disability. People who support someone with cerebral palsy are supposed to wear something green today. Or put on a green ribbon.
I’m not saying it is a bad thing, I will even go so far as to say that for some it might be a nice idea. I’m just not sure that I understand it.
National Donut Day means that I can go get a free glazed delicacy because I don’t often let myself indulge.
National Puppy Day meant that lots of my friends put really cute pictures of their dogs on social media for others to both enjoy and comment on.
But National Cerebral Palsy Awareness Day? Believe me, I am profoundly aware of cerebral palsy every single day of my life. And most people who would wear green if I asked them to are continually supportive of cerebral palsy awareness anyway. Why does there have to be a day singled out to promote it?
Why isn’t there a National Blindness Awareness day? Or a national Cystic Fibrosis Awareness day? Lots of people struggle with issues related to disability, and I don’t believe mine is better or worse than anyone else’s.
Today also happens to be National Waffle Day. Personally one of the things that means to me is that scrambled eggs and biscuits and gravy get a bad rap. Just sayin’.
I believe that people with disabilities have rights. I believe that society is not always kind to people with disabilities, and I believe that awareness can be a good thing.
I also believe, with everything in my heart, that people with cerebral palsy as well as any other disabling condition need to be respected, empowered and listened to. I believe that should happen today. And tomorrow. And every single day thereafter.
Here’s hoping that the awareness raised from National Cerebral Palsy Awareness Day will last all throughout the year.