If you heard an angry roar today, it was a momma bear on the west side of town.
There’s much of this journey into disAbility adulthood that reminds me of the shell-shocked uncertain steps we gingerly made at the beginning of this journey 20 years ago.
I’ve been reminded of the rude slap in the face of just how incredibly cruel our culture and its systems are to people with disAbilities.
Parents just starting out learn that their special needs loved one’s rights are not the same in public schools as typically developing children. You better get smart quickly on special education law and your federal rights. Too often school systems knowingly and unknowingly hood wink you that you don’t possess FAPE. (One of the bazillion acronyms you’ll need to master. It stands for a Free and Appropriate Education. Take nothing for granted.)
So here we are, 20 years later. All grown up. School is but a memory. What a piece of cake compared to the nightmare of red tape entanglement via a myriad of large, dysfunctional governmental agencies that are assigned to serve our rights, that again, cannot be taken for granted. Like housing, employment, community engagement, and inclusion.
I coined a phrase back then, all those years ago when Grace was just a wee one, as I began to awaken out of the fog of my grief process:
The systems that are supposed to serve us often end up wounding us.
Here we are. Grace is actually oblivious to it all because I’ve made sure she’s gotten what any human being deserves, but that she doesn’t automatically get because she has a disAbility. This momma bear is beat up and scarred from the battle of taking on every. single. agency and escalating repeatedly to senior management to get what is supposed to be done done.
Momma bear is battle weary. Frustrated. Conscious of the joy sucked from me during these nine months and reminding myself to be conscious of the small ways I can resuscitate my spirit. Thank god, today I made it to NIA. I sweated. I danced. I took on the ever contagious joy of my teacher, Kim.
The momma bear has still got her claws out, ready to clear the next inevitable blockade. We are not done yet, that’s clear. And her roar? Just a little hoarse. But with a little Earl Grey, lemon, and honey, her throat will repair in time for the next affront.