Because I live on a ventilator and am nearly quadriplegic, I have 24-7 nursing. Having this nursing is the only thing that stops me from ending up in a facility or nursing home in my 30s.
Once a year, every year, the state gets to decide IF I'm allowed to keep my nursing care.
Once a year, every year, the state gets to decide IF I'm allowed to keep my nursing care.
Today is one of my least favorite days of the year. I sat with a woman for an hour who asked me a bunch of questions and fills out a report, which is then sent to the state.
Some random person, who knows little about me, will determine if I'm worthy of continuing care and life.
Some random person, who knows little about me, will determine if I'm worthy of continuing care and life.
IF the state were to determine I'm not worthy of such care I would be forced to go to an institution. I would have no recourse and no alternatives. It would happen, against my will for "my safety"
Imagine, if once a year, every year someone had the power to determine your future
Imagine, if once a year, every year someone had the power to determine your future
Imagine if every year you had to go through the anxiety and worry that someone who doesn't even though you or about your life can determine that your existence is not worth anything.
They literally have the power to lock you away. And there's nothing you could do about it.
They literally have the power to lock you away. And there's nothing you could do about it.
This is one of those "Invisible" problems that being disabled brings; things that people don't think about
In fact, the situation is probably incomprehensible to many. Someone has the power to just put you away? Yep. State of PA has that power over me and anyone in the system
In fact, the situation is probably incomprehensible to many. Someone has the power to just put you away? Yep. State of PA has that power over me and anyone in the system
It will be weeks before I know (because the system moves slowly) and every year I have been approved.
While I don't expect that to change, it's still an amazing mind-fuck that I must go through every year for an entire week+ wondering if my life is about to change forever.
While I don't expect that to change, it's still an amazing mind-fuck that I must go through every year for an entire week+ wondering if my life is about to change forever.
This share was inspired by my friend, @craigums who challenged me that I don't talk the inner workings of my world & what it's like to be disabled from my POV. He was right
I may turn this into a post but for now I hope small glimpses into my world will help you appreciate yours
I may turn this into a post but for now I hope small glimpses into my world will help you appreciate yours
