A young man from my hometown, who I only kind of knew, passed away on Christmas
Eve. He had severe cerebral palsy.
He died of pneumonia.
I've been "in this world" of working with people with developmental disabilities for about 7 years now. In this time, 3 people with cerebral palsy who I sort of knew, or knew through someone else, have passed away.
This guy we lost on Christmas really is haunting my thoughts these days, making me understand some things I didn't understand before. Like how conductive ed can seem so cruel, but how scary the alternatives can be. I understand when people think it's fighting for the lives of their children.
There are some days I understand Ashley X's parents, as much as I don't want to. It was still wrong. I understand it though.
Would conductive ed have saved him? ABR? A communication device and good training on it early so he could have said he didn't feel well?
I bristle when people want to "fix" people I love. Disability is like any other fact of life, like blue eyes and big feet. Yet, when I hear news like this, I understand wanting to fix it, or make it better, or give him the best chance of not dying of pneumonia in his 20s.