On my first night at the rehab hospital, I was about as vulnerable as a person can be. I'd been in the ICU at a different hospital for a month. I had a new tracheostomy and was using it to breathe with a ventilator -- a new and frightening experience for me. I also had a new feeding tube, a PICC line, a catheter for urinating, and I'd barely been out of bed for that whole month.
I was weak and unable to speak. I communicated by writing on paper, which required the absolute cooperation of whomever I was communicating with. Basically, they had to consent to let me "speak" by handing me paper and pen, then waiting for me to write my message. (BTW, this procedure is the reason I am kinder to spelling errors -- my own and everyone else's. Spelling used to be a pet peeve. Ah, the luxury.)
Leaving the ICU, I chose between two rehab hospitals that I knew nothing about. My parents visited each and each sent representatives to meet me, "assess" me and lobby hard for me to choose their institution. I made a wild guess, choosing the hospital farthest from my home and requiring almost an hour's more commute each way for my parents as they came to see me most every day for the next three months.
It was the right choice. I ended up at place filled with amazing, dedicated people. But that first night was terrifying. And not just because of my own uncertainties.
I've got a knobby little tailbone that sticks out. I've never ever had a pressure ulcer (also called a "bedsore" or decubitus ulcer) anywhere on my body, including my tailbone, in part because I've spent quite a bit of time lobbying on it's behalf every time I put my body into strangers' hands, lay on a hard x-ray table, or require other people's assistance in keeping it healthy. For my four months in the ICU and rehab that meant an inflatable mattress on my hospital bed and frequent repositioning.
Sometime during my first night at the rehab hospital, I woke up needing help to roll over, a rather complicated process when I was so weak and had so very many tubes to avoid yanking. I rang the bell for help and a nurses' assistant showed up. I forget her name, but she had an accent so I'll call her "The Russian" as I did at the time to family and friends.
She understood I needed to be repositioned and she told me she needed to go get another person to help. It is commonly a two-person job in acute care settings and may even be required procedure, but when she didn't return and my butt began to ache badly from laying in one position too long, I rang the bell again.
The Russian returned alone to tell me she was trying to get help, then left again. I don't know exactly how much time passed, though it was easily 30 minutes since my first call for assistance, and it may have been as long as an hour. My butt was throbbing painfully now, sparks of nerve pain shooting down my leg. In desperation, I spent significant energy wrestling the pillow wedged behind my back away enough that I could shift slightly and ease the sharpest of pain to buy some time.
Shortly after, The Russian returned. Again alone. She saw the pillow had been moved and began berating me: "Why you bother me? You don't need help! You did this yourself after bothering me? If I catch you ever moving by yourself again don't expect me to do anything for you!"
I had no opportunity to tell her what I was thinking: "You will too frakking help me! That's your job! $ & % #*&!"
In order to reply, she would have had to agree to handing me my paper and pen, and she either didn't understand that's what I wanted or she purposely refused. It was a long fearful first night after that, not knowing if help would come if I needed it (for repositioning or breathing or whatever), and for the next many nights until I learned that her behavior was not typical of the institution or people working there.
In the morning when my parents arrived, I told them all about The Russian, writing the incident out for them in detail. I didn't take it further than that and neither did my parents.
Why? Because I didn't yet know if she ran the night shift, if others held her view and I was stuck somewhere where being the squeaky wheel might further endanger me. Because I was immersed in trying to get my primary doctor to hand me the paper and pen instead of telling me about my care and walking out the door. Because the speech therapy folks were busy giving me cognitive tests and asking things like if I knew where the window in the room was. Because in addition to my serious health issues I had one giant communication problem with getting people to treat me as an aware, active participant in my own recovery. Because the principle and all-consuming job in being an inmate in any institution is self-defense, just keeping well-meaning professionals from accidentally making you sicker.
My parents were equally immersed and could certainly have reported the incident, but when the abuse didn't recur, we all ended up focusing on the next most emergent issue. And there were dozens of them.
Was The Russian just having a bad night? Maybe. But I think she was hazing me. Three long months later, on the night before I came home, she stepped into my room to tell me what a pleasure of a patient I'd been. "No trouble." Compliant, she meant, of course. Less needy than other folks. There hadn't been a night for those whole three months that I hadn't been acutely aware of whether or not she was on duty.
The most disturbing part of this story is that I didn't tell her supervisors, right? I was conscious, had by wits about me (more-or-less), had caring family visiting daily, and knew at the time it happened that she was being abusive of her power over me. But this is how institutional abuse starts, why there is space for it to lurk even at excellent institutions. I was busy surviving and her behavior was only one of the many scary things I was subject to.
What would have happened if I had told her supervisors? Would I have been believed? Would I still have been subject to her care after essentially threatening her job? Were there a dozen other employees like her I just hadn't met yet who would hear I was "troublesome"?
What if I hadn't had any visitors to tell, providing, as my parents did, psychological assurance that further abuse could be responded to? What if I had been unable to communicate any of this to anyone, as was true for many of the people in rooms adjacent to mine?
Abuse doesn't really need much space to thrive, and it needs even less to occur only once. Probably not everyone would consider this abuse. But it was a verbal threat to deny me assistance while lying helpless in a bed from someone charged to show up if, say, my ventilator quit giving me air. Like any sort of intimate violence (domestic violence, date rape, etc.), violence against disabled people is contextual and opportunistic and can happen to anyone.
