I think I just discovered yet another reason for the mortality rates in nursing homes.

So I get most of my services from an agency that treats me well. And then there’s the VNA. They provide bathing and intimate care. The VNA does its best to resemble a nursing home without the walls and stuff. I know people who get all their services from there and it’s truly dismal.

So an LNA comes over today to do all the physical assistance they normally do. Mostly involving washing me and applying medications to my skin. It involves a lot of grabbing me and moving me around.

Most days, I interact with them. I say things. (Which, for me, involves typing on an iPad that’s seriously clumsy in that posture in bed.) I move my body more than is required of me. I visibly react to things they’re doing and saying. I pull away or squeal when they dig their fingernails into my vulva. I tell them when they haven’t dried me enough, or when they miss a spot. I pull away when they put things where they don’t belong. It doesn’t look like a lot at the time, but it’s interaction.

Today I feel sick. My chronic nausea and lack of appetite is flaring up for reasons unknown. I’m not throwing up, but I’m sluggish as all hell. And I feel gross all over. I’m not thinking clearly. Things are not good, and they look not good to anyone who is paying attention.

When the LNA went through her routine with me, I didn’t interact with her at all. My eyes stayed half closed the entire time. I let her lift and manipulate my limbs without interfering. I didn’t squeal or pull away when she put her fingernails in places fingernails where fingernails just shouldn’t go. I can still feel the pain from that. I didn’t alert her to wet areas she didn’t dry. I did the bare minimum of movement required of me.

Any staff person who normally works with me, from outside the VNA, would have noticed something very wrong immediately and asked me if I was okay, to make sure it wasn’t something serious. In my current physical state, the effort of replying would have bothered me, but I’d have understood why they had to find out. I’ve got several conditions bad enough to put me in the hospital. They have to make sure it’s not that, because I sure as hell won’t, not when all I feel like doing is going as inert as possible.

(My body is intent on proving my point. It just spent several minutes getting me to do absolutely nothing.)

But when the LNA was here it became clear she was relieved. Relieved because I am just one more body she has to contend with. And my feeling sick meant that she could just interact with me as another body she could clean.

(Insert another period of doing and thinking absolutely nothing for a few minutes instead of writing.)

This made it easier because I did not resist her moving me around. I did not give her any instructions. I did not tell her she did anything wrong. This made her physical interactions with me easier and more efficient.

(Insert another inert period.)

Nursing homes are organized more for the convenience of the employees than for the people who have to live there. So is the VNA.

Certain ways that people behave when sick with some kinds of conditions (including ones that are life threatening) are so much more convenient for staff, than actually having to interact with us as people. This way we behave is especially true of people with communication problems or severe cognitive or physical impairments, where lethargy may be the only outward sign of something fatal. And people among that group who are more likely to get ignored than others include both women and people of color.

I can totally see the less ethical staff in a nursing home welcoming the ease of taking care of people in all the routine ways, that comes with those kinds of illness. When someone’s too lethargic to interact much, they’re usually too lethargic to interfere with routine care in all the ways that healthier people need to do. And some staff would see that as a relief, not a danger signal.

And when danger signals get ignored, people die. I have needed hospitalization at times when I looked not a lot different from how I do today. I’ve become really really Inert as the only outward sign of things like having an organ fail on me. The first step in learning whether I’m in danger, is to ask me how I’m feeling. I may not always give the best answers — but it’s the first step of many, not the last.

(Insert semi-inert period.)

And yes. As far as I know, I’m okay. I need to keep a really close eye on this though, because things like this can change.

(Insert another inert period.)

The number of ways that places like that can put us in danger. It scares me and it pisses me off. Like our lives are less important than the convenience some people experience as they maneuver(*) our bodies around.

I had better go because my body wants to be inert. Or at least more inert than writing long(*) involved posts(*). So, yeah, stopping now. But this is a seriously fucked up situation that is life and death for people who are(*) in situations where most or all of their caregivers have this mentality.

===========================
(*) Yet another inert period.

What you probably don’t know about some caregivers.

Please, before you read this post, it’s really important to me that you first read I don’t have to allow people who hurt me to use pieces of my brain for their own purposes. Because this is my first attempt to write about something extremely serious while avoiding that dark, focused state I described. If at any point during this post, you end up feeling like that, then try to resist it. Because this topic is scary, but feeling like you’re trapped in a world so horrible and terrifying that the good things about it are a long way off if they exist at all? That plays right into the hands of the kind of people I am going to write about.

The reason I have decided to write about this is that very few people we aware of it. Some people work out parts of it but few people work out all of it. I found it in an obscure, out of print book called Violence and Abuse in the Lives of People with Disabilities: The End of Silent Acceptance? by Dick Sobsey. It’s one of those books that cites sources several times a page, and it’s out of date but as far as I know it’s the only book of its kind. Any bolded parts are mine:

These five considerations for training and service delivery provide important directions for law enforcement. They also suggest two interrelated areas of concern. First, these five stated considerations arise from the perspective of family violence; however, many people with disabilities are victims of institutional violence, which has its own unique considerations. Therefore, police need training relevant to institutional, as well as to family, violence. Second, successful police work will require an understanding of the nature and dynamics of human services systems and the social realities encountered by people with disabilities, as much as an understanding of disabilities themselves. Law enforcement must be prepared to address the special needs of people immersed in the service system and the unique features of conducting an investigation in service environments.

For example, an investigation of 29 highly suspicious infant deaths in Toronto’s Hospital for Sick Children led to the quick arrest of a registered nurse for the murder of the most recent apparent victim (Bissland, 1984). The nurse was charged because she had been assigned one-to-one supervision of an infant whom the police felt certain had been murdered, and they believed that she was the only one who had the opportunity to commit the crime. However, more thorough investigation revealed that the nurse who had been charged was not working on the dates of some of the most highly suspicious deaths and had been relieved on lunch and breaks by other staff on nights that children in her care had died. The murder charges were dropped, and a civil suit for wrongful arrest soon followed. In the end, the probable murder of at least 8, and probably as many as 29, children by Digoxin poisoning went unpunished.

According to Bissland (1984), some of the complexities that thwarted police were a lack of knowledge of hospital procedures, apparent reassure to make a quick arrest so that the hospital could return to its normal routine, and an apparent lack of cooperation on the part of some hospital staff. For example, police were told that critical records of nursing assignments at the time of the deaths had been destroyed, but the missing records resurfaced long after the investigation had gone astray. This pattern of less than enthusiastic cooperation from within institutions is not unique.

Police in Grand Rapids, Michigan, were more successful in securing the conviction of two nurses in the suffocation of six nursing home patients; however, a similar pattern of institutional resistance plagued their investigation (Cauffiel, 1992). Available evidence indicates that similar serial murders in hospitals and nursing homes are likely to be as common, if not more common, than serial sex slayings or thrill killings (e.g., Hickey, 1991) that are typically given widespread public and professional attention. Despite this fact, little research has been conducted on the part of law enforcement to develop profiles of these medical murderers or specific investigative procedures for the institutional settings where these offenses occur.

Better success in policing institutional offenses can only occur when the principles of community-based law enforcement are adequately applied to the ethnographically distinct communities and cultures of hospitals, residential schools, group homes, and other service delivery systems. Police must understand the internal dynamics of service institutions to perform their job effectively within these environments. Before this can be accomplished, police, and society in general, must identify this as a law enforcement priority.

Often this commitment appears to be lacking, and abuse and violence in institutions remain hidden or are rationalized. For example, in the case of the Grand Rapids nursing home murders described above. Cauffiel (1992) quotes Ken Wood, the estranged husband of one of the convicted killers, saying:

How much life did she really take? All of the victims weren’t even living. They enjoyed nothing, experienced nothing and were going to die. The families at the time of death were relieved at the end of suffering … I know they had no right to play God … but when you decide how much of her life should be taken or lost to prison, shouldn’t it be equal to what was taken from their victims? (p. 485)

Although these were the words of a husband pleading for leniency for his wife, Cauffiel (1992) suggests this was “a view not uncommon in Grand Rapids, in Michigan, or in America, among those who became familiar with the coverage of the Alpine Manor murder case” (p. 485). This view contrasts sharply with the reality that most of the patients killed were not particularly debilitated and perpetrator Cathy Wood’s own statement that “we did it because it was fun” (quoted in Cauffiel, 1992, p. 254). Such rationalizations that trivialize serious crimes against people with disabilities can only be seen as denying their right to equal justice. Progress toward reducing risk of violence and abuse for people with disabilities quirks that equal protection of the law is applied to all members of society.

Elsewhere in the book it describes people who deliberately go into caregiving fields for the purpose of finding easy victims. So not only that. But this kind of serial killer is at least as common, probably more common, than the kind you hear about on the media, that popular culture is obsessed with. Some of them are suspected of killing hundreds of people. And yet the media doesn’t give a shit and neither does law enforcement. So you never hear of it.

You do hear of some people like this though, just hidden in various ways under other guises. Many of the most famous figures in the right to die movement were either serial killers or wannabe serial killers, people who clearly got off on death, rather than people who had any ethical interest in the subject. And you can bet there’s more hiding in plain sight that we don’t know about. I know someone who is almost certain his significant other, active in that movement and obsessed with serial killers, has killed people in their job as a nurse. But lacking evidence he can’t do anything about it. Mind you, even if I don’t agree with them, I know there’s plenty of people in that movement because of a sincere commitment to their personal ethics. But it takes naïveté or wishful thinking not to notice that some of the leaders are really creepy.

And not only all that. But even though this is known to be a big problem, the media doesn’t care much and neither does law enforcement. Which is about typical when any of the “wrong kind” of people get killed on a regular basis, whether it’s disability or something else.

But what this means is that disabled people have plenty of reasons to be wary of our caregivers. I thought of posting this because someone responded to a part of my post where I said I refused to be alone with a caregiver after they know they’ve been fired. This sort of thing is exactly why. You never can exactly predict who will become abusive, whether it’s emotional abuse, physical abuse, or even killing. I found that out the hard way in institutions, where I am absolutely certain that some of the people who worked there had actually succeeded in killing other people even if they didn’t succeed with me.

But as I said before. Being completely terrified about this only plays into the hands of the people who do it. Be aware. And be careful. And take precautions. But don’t let this sort of people have control over your emotions, because that doesn’t help anybody.

Please tell people these facts though. Because few people seem to even realize that not everyone in healthcare or caregiving professions is there for good reasons. Let alone how many serial killers there have been. One group of caregivers is even suspected of 49-300 murders according to this book. That puts them up there among the worst of other kinds of serial killers.

It must seem perfect to such a person, to get to kill people without as much chance of getting caught, and even if you do get caught people may still make you out to be a hero. People die all the time in nursing homes, even people whose conditions shouldn’t be terminal. That’s taken as normal by people who equate disability with being halfway towards death anyway. In most kinds of institutions colleagues will cover for you — that’s how you get so many deaths from heart problems and seizures in people who didn’t have heart disease or epilepsy. And lots of people think disability is worse than death so killing us is doing us a favor. Or at least they’ll excuse it on the grounds of caregiver stress and burnout. And the cops don’t investigate much anyway, since we aren’t valuable to them. It all adds up to a situation where any serial killer who truly didn’t want to get caught, would jump at a chance to take that kind of job.

So let people know about this. Let people know it happens at at least the rate of other kinds of serial killing if not more. And take precautions with even caregivers you trust. But don’t get trapped in fear or despair, that’s what such people want of us. It helps them, not us.

I can’t quote this one

I’m still reading the book of old Disability Rag stuff. (I’ve also got a CD of everything they ever published.) And… I got to this one article I wanted to quote. And I tried. And I can’t.

Quoting requires slowing down and really thinking about the words. It requires typing the words, which aids me in understanding them. And I can’t make myself want to understand them enough to quote them.

It’s all about nursing homes and rehab and the glamour that companies use to fool people outside them into thinking they’re good places. There’s lots of details that match any other institution I’ve seen. So there’s that.

But there’s also this terror. Because I know I more than qualify for a nursing home. And I have had people try to say I belong in one. And I know that with a few exceptions I’m losing stuff rather than gaining it. And I’m watching a friend with an autoimmune disease go through similar changes. And I’m afraid either of us could end up there. And I have a very good idea what they’re like, having volunteered at them and visited my mom at work.

And just no. I can’t call up those images right now without panicking. Maybe some other time but definitely not now.