Imagine waking up to find yourself strapped down in bed, completely unable to move. You’ll probably be unstrapped soon, but until then, do you go back to sleep? Can you go back to sleep? Should you even try?
No, I’m not talking about Gerald’s Game (although the movie that just came out on Netflix is pretty good – the book is better).
When I was a Freshman in college, I was pretty new to the home health world. I didn’t really know the ins and outs of how everything works. I had a nurse overnight and an aide during the day to help me get to all my classes, eat, do laundry, take showers, clean, and pretty much everything else I couldn’t do myself. My nurse at the time, we’ll call her Lindsey*, was one of my favorite people in the world. She was around my parents’ age and had a son around my age who she always joked about fixing me up with. She was my nurse during the week and the agency I went through back then could barely keep track of my schedule, much less fill it with able nurses who were willing to work nights. So for a while, if she wasn’t able to work, my dad had to travel from about 2 hours away and take care of me overnight. This was very disruptive to both of our lives, but I was still grateful for whatever I was able to get from the agency.
In the Spring of my Freshman year, Lindsey’s son came home from college to visit her. Apparently she hadn’t seen him in a while, because she told me at the beginning of the week that she wasn’t planning on sleeping away his visit so she was going to sleep during her shift with me. I said that that wouldn’t be a problem, despite the fact that it was breaking state laws, because I knew that the alternative was not having any help at all. It was the week of midterms, so I didn’t sleep well that entire week and probably asked her to turn me a lot (as that was the main reason she was there). I noticed by the end of the week, I had to call out for her help a lot before she would actually hear me. That didn’t bother me, because I kind of felt bad that I needed the help and she needed the sleep.
Apparently I called out for her help one too many times that week.
On Friday morning, her last day working that week, she woke me up about a half hour before her shift ended and about an hour and a half before my classes started for the day. I remember waking up with a jolt because it was much, much later than I normally wake up and I thought I had missed a class. But I didn’t. Lindsey told me that I had turned too many times that night and that because of that, she wasn’t going to give me a shower and I would have to figure out how to fit that in during my already full day. She said some other things I don’t remember (or maybe I’ve blocked out), but she made it very clear that she was not showering me as a punishment because I called out for help even knowing how tired she was. She also told me that my aide would have to get me up and out of bed for class because she was just too tired. She seemed pretty mad at me too. I don’t think that’s much of a stretch to assume considering everything else she said.
This past January, I had a similar situation in which a different nurse threatened to leave me in bed because my aide from the same agency got lost on the way to my house and was going to be 20 minutes late. After explaining to my nurse that it was unsafe to leave me in bed because I couldn’t use my phone or laptop to call out for help in case of emergency and I couldn’t even let the aide into my house, she begrudgingly walked out of the room muttering under her breath and taking all of her stuff with her, as if she was packing up to leave. I honestly thought she was leaving me completely helpless, alone, and unable to call out for help.
I ended up negotiating with her (read: yelling out of my bedroom and hoping she could hear me) and only when the terms were agreeable did she actually come back into the room with me and help me get out of bed before flying out of the door without so much as a goodbye.
Before I get comments, yes I reported both of those nurses. But I’d be lying if I said I didn’t hesitate before I did it. I honestly felt bad for putting both nurses in a position where they felt like they had to abuse or neglect me. I know how messed up that sounds.
The thing is, it’s still abuse, even if I (or more accurately, my home health agencies) inconvenience my abuser. So why do I even feel bad?
According to a survey from the Disability & Abuse Project, over 70% of people with disabilities self-report that they have been abused, and 90% of those people say that the abuse has occurred on more than one occasion. That means that if you know some people with disabilities, the majority of them have been through what I have – or worse – and probably more than once. Have you ever heard any of them talk about it?
I can only speak for myself, but I can tell you why I don’t mention it.
Recently, there was a murder in the disability community. 27-year-old Nicole Beilman was shot and killed by her father in the backyard of his home. In his public statement, Police Chief Samuel Farina falsely said that Nicole was completely dependent on her father for physical care, when in actuality she utilized a few state-funded care programs. In doing so, he implied that her poor father was suffering from caregiver fatigue and tacitly legitimized a father murdering his adult daughter because she was disabled.
This has happened before and I’m guessing will happen again. Caregivers murder disabled people. It, like the abuse, isn’t talked about much outside of our community. But it breaks us. And by “us”, I don’t just mean people with disabilities. I mean the entire population. We are broken as a population if we have more empathy for an abuser than we do for his victim, regardless of how worthy of life we view the victim.
I felt guilty when I told on my abusive nurses because I had internalized the public perception of disability. I had convinced myself that I really didn’t deserve to not be abused. That my nurses had perfectly valid reasons for not fulfilling their duties. And, most troublingly, that enduring abuse and neglect was the price I had to pay for being disabled.
If I could go back in time to those mornings, after the nurses had left and I was sitting alone, struggling with the decision I had to make – to report or not to report – I would tell me to be easier on myself. That however they justified it, those nurses weren’t right to do what they did. I don’t deserve to be mistreated.
I hope that if anyone is struggling and feeling like they’re being abused, they call their state’s hotline for disabled adults, or the police if they’re not disabled. Please. Because abusers will use any excuse they can get to justify their behavior. Don’t make it easy for them.