Welcome to my Disability Awareness & Advocacy Blog, The Underground Advocate!
First, I didn’t want this blog/journal to be anonymous. I wanted to be upfront and transparent and tell it like it is for all the world to know – that both my son and I really exist. That we are everyday, real people (but still unique).
Sadly and with a lot of fear about the direction in which the United States and the world is heading, I am forced into going undercover. Social media can be a friend, but can quickly become the enemy.
Let that one sink in.
All the names of everyone involved have been changed…. because “we” are all innocent and trying to survive the best way we know how, while protecting our children, our families and ourselves. We know that if we make too much noise in the wrong places, we could all go under and even lose custody or guardianship of our children, whether minors or adults.
Evil does exist in the most unlikely of places, these days. I’ve heard horror stories of how government and state/county agencies and courts have over-stepped their boundaries every day – and actually lie (twist facts; make up stuff) to shut parents/guardians up in order to make the “problem” (our children’s lives) go away. Maybe they’re on a power trip. Maybe they just like hurting people. There are vindictive, horrible people out there who really don’t care and yes, don’t give a shit about our kids or any of those who are dependent on the various systems to live and survive. You know, there’s this thing. It’s called quality of life. I’d like to hear a lot more about that. I’d also like to hear a lot more about “thinking outside the box” and “doing the right thing”.
I say “we” because I would like to make the offer to other individuals, parents, guardians and families to tell their anonymous stories here as well. If anything, it spreads awareness, and perhaps change, or might in the end lead to some kind of cosmic balance in the universe. It also might reverse what I see going on now… and that is again the backward direction that I see going on when it comes to people with disabilities. I see our most vulnerable, fellow human beings, on a road back into merely existing within institutions. Warehousing of the most severely, multiply-disabled, non-verbal people STILL exists.. but no one outside of their families (if they have a family) within a main-stream society give them a second thought.
So, let’s see. I guess I will call myself “Jane” and my son will be “Max”. Max is a young man, with cerebral palsy. He is “propelled” in his wheelchair by others. He cannot speak and has complex communication needs. He is also very social. He has a wicked, dry sense of humor… he knows exactly how to amuse himself at the expense of others. I adore him. There are, however, those moments when too much activity and/or noise can cause over-stimulation/sensitivity within his environment, and he will become upset and yell and it’s obvious that he’s pretty pissed off.
Max has lived in a group home the past couple of years. It took me a long time to come to that decision and several months for transition. I am disabled myself (surprise!) and physically it was becoming harder and harder to care for Max. I was able to have some care providers come in during the day through several state programs paying for this (nothing much beyond minimum wage), but then it got where I couldn’t find anyone.
I wish that I could “go back” and change my mind…. and worked on another type of solution for Max’s sake, if there ever could have been one. Group home living wasn’t what I “thought” it would be (or was led to believe) …. and I’ve seen pretty much month by month and then, year by year, it go downhill. Hindsight is 20/20.
By the way, all of those state and federal agencies and organizations that screwed me and my kid, I’m going to expose their bullshit.