For people with severe physical disabilities like mine, the fear of institutionalization is never far removed from our thoughts. It looms at the periphery of our daily lives, an ominous reminder of the precariousness of our independence. The closest I’ve come to institutionalization is when I was thirteen and first put on the ventilator. Hospital officials suggested that I be put in a facility for medically fragile children, which would have required my parents to surrender legal custody of me. My parents refused and that was the end of the discussion.
Through luck or circumstance, I’ve never been in serious danger of being placed in a facility since then. But I recognize that my comfortable living situation hangs by a tenuous thread. If I suddenly lost a couple nurses, I would be in serious trouble. I don’t have much family in the area to provide backup and it takes time to find replacement staff. I’m fairly confident I could figure something out, but it would be touch-and-go for a while.
Remaining independent and keeping myself out of a facility is probably one of the primary driving forces of my life. It takes precedence over any other long-term goals I might have. I can’t have a career, I can’t see the world, I can’t have a relationship if I’m warehoused in a nursing home. Fortunately, it’s not an immediate concern at the moment. It’s more of a low-level anxiety that can usually be ignored, but it will most likely never go away.
It is obvious to me that someone with an exceptional rich spirit ans lots of hobbies and interests like you have, can be happy anywhere, even in prison for instance, or in such a “facility” as you refer to.
Dostojevski wrote: “Man is the creature who adapts himself to anything. “(Wo has studied the human character and the depth of the human soul better than that Russian realistic writer?)
Anyway, I’ve never heard or read a more comforting and true phrase!
I spent 4 years in a nursing home in the early 70s and I too would rather live free or die. Everything is justified under the notion of medical necessity and they will point out that you are free to leave anytime you want, of course you are flat broke, disabled, and alone so you learn to play nice and quiet. Prisoners have more rights.
I understand that low-level anxiety; I share it. But I figure if I ever get stuck in one, I’ll lead an uprising and we’ll escape en masse.