My case managers used to ask me every year if I wanted to choose home services – so I can stay in my home or a nursing facility. That question was always absurd to me: why would I leave where I am thriving to go to a place where I am almost sure I would not or at a minimum not fully be able to live how I want?
Nursing facilities are marginally good options for a lot of situations where intense care and specialized care are needed. But be very clear: the history of disabled folx being warehoused in nursing facilities is true and happened not that long ago. Think 60s/70s/80s. In some instances, it’s happening now.
We were given basic shelter, sub-basic care and veritable slop to eat. The public never got to see the horrendous conditions where disabled folx in those facilities were sealed away from public sensibilities. Often mentally ill, developmentally challenged and disabled folx were all warehoused together. They were either under medicated or over medicated or wrongly medicated. There were facilities were there wasn’t enough aides to attend to the patients. So they’d go without bathing, toileting, washing. They’d buzz everyone’s hair off to make it easier on the staff they could get to stay. The patients were often naked or nearly so. It was a horror show behind closed doors. A family member suggested to my Mom, after finding out that my older brother and I were both disabled, that she send us away to one of those facilities.
Yes. You read that right. It was suggested that we be sent away, out of sight. Because we’re disabled. If not for the strength and insistence of my Mom, y’all may not know of me now. If not for the early disabled civil rights leaders of the 70s, 80s, 90s – I could not do the things I do, have the protections under the Americans With Disabilities Act that I had to help keep me employed or the freedoms I enjoy living how I want to live, no matter how modest. I would not have rights as a disabled person in this country.I did not get here alone.
So when my case managers would ask and began insisting that maybe a nursing facility would be an option for me instead of staying home? I took and take particular offense. This current case manager has been with me quite a few years and when she began working with me and asked me that same question about going to a nursing facility?
I told her to NEVER ask me that question again. EVER.
So it was with sadness and anger that I heard it say, by someone who at one point used to take care of me, that I SHOULD be in a nursing facility. Imagine never reading my words again. Never seeing new art from me. Never running across my silly brand of humor. Imagine it. Close your eyes and experience that absence…And this is from a person who took care of me. Whom I’ve helped.
This is the bullshit I fight EVERY DAY. Those who know me, those whose lives I’ve touched, those who’ve heard my voice, my tears, my laughter wanting that choice for Me.
This is some of what is said when they think I won’t know.
My disability is not an inconvenience.
My disability is not a problem to be fixed.
My disability is not a thing to be shoved aside, hidden.
My disability is part and parcel of Me.
Imagine all the other Sandra’s and Joe Disableds who have been silenced over the years. Imagine how much you have missed out on by them not being here, by them being warehoused, made to stand apart from society.
Some Able-bodied people SUCK.
Y’all need to do so much better.
EDITED TO ADD: