BADD: Pulling Back Curtains

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Blogging Against Disablism Day, May 1st 2012

This is my other post for Blogging Against Disablism Day (BADD) on May 1, both about caregiver abuse, this one about the most extreme kind. It’s in a heavy topic, but a necessary one given the public’s response to several recent murders of disabled people. The situations I’m describing are somewhat different from the recent murders that have come to light. But what we can learn from them is important to all such situations.

1. Introduction: Pulling Back the Curtains on Hate and Love

This is my first attempt to write about something extremely serious while avoiding a dark, focused state I recently realized was unhealthy. There are good and bad kinds of dark, just like there are good and bad kinds of light. This was the bad kind of dark, not the kind that protects but the kind that consumes and drowns you. It felt as if the entire world was engulfed in this place that was intensely dark, and focused into a kind of false but convincing clarity. Hiding inside that false clarity was a belief that this horrible state of mind was all there really was to the world when you stopped pretending that there was nothing bad going on.

Along with this state went a sense that I was doing the world a favor by constantly immersing myself in it. But while the information I was giving out was important, it was tainted everywhere by this state of mind. I felt like I was telling the world the truth, but it was only one part of the truth. Because the real truth allows for the possibility of fighting this stuff and winning. But the truth I was telling had all kinds of warping around the edges.

I felt like I was lifting away a curtain of ignorance among most people as to exactly how awful the (human, social) world can really be to anyone who isn’t valued. And in a way, I was. But I was not lifting away a second curtain. Behind that second curtain was everything good in the world, that remains hidden from most people as well. Behind that curtain is every possibility for love, compassion, cooperation, and hope. Not the fuzzy greeting card version, but something so powerful, fierce, and solid that it can evaporate all the awful stuff that lies behind the first curtain if enough people act on it.

It was painful events in my own life that led to my conviction that I had to tear aside the first curtain and make everyone stare into the awful facts I was aware of. But in doing it the way I did it, I was allowing the people who hurt me free use of my brain to hurt other people. Not that they were literally sitting there controlling my brain. But their actions caused a ripple effect. I was part of it and by my actions unwittingly allowed their influence to spread wider. This often happens to survivors of abuse and oppression. And it allows terrible things to spread around far beyond the original targets.

If at any point during this post, you end up feeling anything resembling that dark focused state, 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.

2. Caregivers from Hell

The reason I have decided to write about this, despite that risk, is that very few people we aware of it. Some people work out parts of it but few people work out all of it. And in light of the way people have been excusing several recent murders of disabled people, it’s as relevant now as it was when it was written. It shows the flaws in the idea that our deaths are excusable or at least make sense. And it provides information that should make disabled people and anyone who cares about us careful in selecting, interacting with, and checking up on caregivers.

Please be clear: Not all, not even most, caregivers are like this. But just as disabled people have to be careful that caregivers don’t rob our money or possessions, we have to create other safeguards as well, to address the huge power imbalance that allows the events described in this post to happen without many people noticing or caring.

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. I bolded parts of it for emphasis:

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.

And people are willing to excuse it on the grounds of caregiver stress, our purported lack of a life worth living, the idea of mercy killing, and all kinds of other bullshit. Even when the description of our impairments doesn’t match our actual ones, which happens pretty much any time anyone kills us for any reason. And even when the killers specifically state they did it for fun. Which happens far more often than you’d think. I remember one account of a woman who killed patients in a hospital or nursing home so that their names spelled out words. Of course even when caregivers are burned out, even when they believe they’re acting in our best interests, even when our purported abilities seem to match our real ones — that still excuses nothing. But it’s amazing how much the public want desperately for those things to be true even when they clearly aren’t.

You do hear of some people like this though, just hidden in various ways under other guises. Many famous figures in the right to die movement were either murderers/serial killers or wannabe murderers/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 appear to be motivated by something other than wanting to help terminally ill people die with a minimum of pain and suffering.

One reason I oppose the right to die is not because there aren’t situations that, in a fair world, I would be fine with it. But rather because, in this world, it would make things too easy for would-be murderers and serial killers. And despite claiming to be all about autonomy, many right to die organizations jump in the moment they hear about it, to support parents who murder their disabled, non-terminally-ill children without the children’s permission. That tells me way too much about the motives of some of the leaders. Things are already too easy so I can’t support anything that makes it even a little easier. But I’m getting a little off track here.

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 I said I refused to be alone with a caregiver after they know they’ve been fired, and someone told me they’d never thought of the power imbalance there. 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 mental 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 if not that, they’ll at least 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. (I suspect far more, because of the ease of hiding it.) 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. Always remember there’s that second curtain that needs pulling back, especially when dealing with truly horrific situations like this. Behind it you will find all the love and compassion required to take a stand even when nobody seems to listen.

3. Commenting guidelines

As with many such posts, I’m explicitly making clear that I won’t accept comments that in any way excuse, justify, or condone murder. Including comments that deliberately skate close to the edge. And including comments that seem to be all about compassion… except it’s always for the murderer. Those are suspect because the only murders where there’s such an outpouring of compassion for the murderer, are ones where the murder victims were a type of person who don’t matter enough for the appropriate outrage to take place. You have the entire rest of the Internet to say things like that, so don’t grumble about free speech either. I want this one little tiny corner of the Internet to be a place where disabled people don’t have to put up with that bullshit. Don’t even try to ruin that.

In this context, posts supporting the right to die movement aren’t welcome either, even by people who sincerely want to prevent suffering. The reason is that in a discussion of murder and serial killing of disabled people, discussion of situations where killing disabled people might be okay, has the effect of adding support to people who kill us without our consent for reasons that are far from benign. This happens even when the individual person arguing for it doesn’t have that motivation. So I’d like you to respect that this is not the time or the place for that kind of discussion.

Finally, please respect that people are grieving for recently murdered people from several different minorities, including disabled people, right now. The fact that the people who killed them were unlikely to be serial killers doesn’t make their deaths any less awful, and people’s widespread defense of their killers any less despicable. I hope I have created one small place on the Internet where everyone matters, even when we belong to groups of people that those with power hate, fear, and consider insignificant.

There are no unpersons here. For everyone who has ever been killed for who they are, regardless of the reason: Rest In Peace. I will not allow anyone here to speak against you.

12 responses »

  1. Pingback: BADD: Something « Cracked Mirror in Shalott

  2. Speaking of pulling back curtains made me think of The Wizard of Oz. I think the analogy is decent, so hear me out. Amanda, you’re Dorothy. The first and second layers are the persona and then reality of the Wizard/whatever lies behind your curtain.

    Dorothy: If you were really great and powerful, you’d keep your promises.

    Wizard: Do you presume to criticize the great Oz? You ungrateful creatures. Think yourselves lucky that I’m giving you audience tomorrow instead of 20 years from now. The great Oz has spoken.

    Wizard: Pay no attention to that man behind the curtain. The great and powerful wizard has spoken.

    Dorothy: Who are you?

    Wizard: I am the great… and powerful… Wizard of Oz.

    Dorothy: You are? I don’t believe you.

    Wizard: I’m afraid it’s true. There’s no other wizard except me.

    Scarecrow: You humbug!

    Cowardly Lion: Yeah!

    Wizard: That’s exactly so, I’m a humbug.

    Dorothy: Oh, you’re a very bad man.

    Wizard: No, my dear, I’m a very good man. I’m just a very bad wizard.

    Realities are often very different from what they appear to be, and it is the unquestioning collective mind that lays the foundation for complacency. Everyone, reveal your wizards behind the curtain, assess their value and move toward your goals. Realize that, like Dorothy, you have had the power all along to fulfill your desires. Just click your heels three times… and if that doesn’t work, believe in yourself. Sing a happy song. You’ll get to where your going soon enough.

  3. I don’t know if you’ve seen this, but there is another BADD contribution whose author apparently is offended by advocates with disabilities opposed to assisted suicide because she believes that people have a right to commit suicide if they wish. And, I don’t disagree per se. But I don’t get a clear sense how much she realizes that those in te disability community who are involved with this movement is not so much trying to reduce the number of *suicides* as it is trying to reduce the number of *murders* that use “right to suicide” as a cover. Her post is at http://www.ilmestykset.net/2012/05/kehojen-omistamisesta-on-the-ownership-of-bodies/ It is in both Finnish and English, you have to scroll past the Finnish part to see the English part.

  4. @Andrea S: Well I’ve seen it now. And it pisses me off on multiple levels, both the assumptions about what we think and the assumptions about how society works. But I’m not going to talk about that here because the last thing I want the comments section of this post to do is to turn into a debate, even a one sided one, on this topic (unless relevant to the subject of the post of course). And TBH I have to dissociate a bit not to get fighting-for-my-life upset about this subject, and I can’t take that strain right now.

  5. I actually thought of encouraging her to come read this post here as I think it would counter some of the assumptions she makes, but I wasn’t sure if you would really want to have to deal with her in the comments. Maybe I could point her at the “Not Dead Yet” site, though I’m not sure she would pay attention. I can understand your not wanting to/being able to/ needing to not get involved in a debate on this.

  6. Scary thought. And yes, with the research I’ve done into serial killers, I could see how someone like that would *love* this sort of situation.

  7. Back in 1982, an episode of the British investigative TV programme “World in Action” argued for closing down old psychiatric institutions and treating people in their own homes. A family doctor who was interviewed for the programme came across as particularly convincing. “If you can stay in the community, receive your treatment in the community with your family around you and your friends, then this all adds to the speed of recovery from the illness”, he said.

    In 2000, this same family doctor, Harold Shipman, was found guilty of murdering 15 patients. A subsequent government report, The Shipman Inquiry, found that he had probably murdered around 250 patients, making him the biggest serial killer in British history. No one knows exactly why he did it, as he refused to say anything about the cases before he committed suicide in prison.

    The stereotype of a mass murderer is that of a strange loner, but Shipman totally failed to fit the stereotype – he was, after all, a doctor who came across as such a model of his profession that he had been invited to appear on TV to talk about care in the community.

    The Shipman case became famous, and has led to a lot more awareness of this issue in Britain, both in healthcare and in society at large.

  8. 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?

    There are so many assumptions when caregivers kill disabled people, and they all seem to be slanted towards the caregiver and against the disabled person.

    It’s assumed all disabled people are constantly on the verge of death, so dying suddenly for no obvious reason is rarely treated as suspicious.
    It’s assumed that disabled people are dangerous and difficult to control in a special and extreme way, so stuff that looks obviously abusive gets a free pass because of people going “You don’t know how it is to deal with those people! How else do you manage them?”
    It’s assumed caregivers all have good intentions, so they could only possibly perpetrate well-meant mercy killings.
    It’s assumed all disabled people long for death, so killing them is seen as a kindness.
    And right there, it’s assumed all disabled people don’t have lives of any real value, so killing them is not a big deal.

  9. I recently saw a YouTube video that left my mind spinning. It was titled “Baby born without brain turns 2” and was about an anencephalic boy who has only his brain stem. Doctors in the video said any movement he makes is only an automatic muscle reaction. His parents had been aware of his condition since before his birth, but decided to keep him alive and love him.

    As I watched the baby, I realized I’d seen the same blank look he had on his face on the faces of some severely disabled people, who do have entire brains but can’t control their expressions well. Is he able to think at all? Whether he can or not, the comments chilled my blood:

    Kill it…The look in its eyes creeps me out…It’s just a piece of ham with a face, that’s all.

    Any one of these things could have been said about you on your videos, or on videos of other people with severe disabilities. I can’t stop thinking about what could happen to this child if he continues to grow and survive.

    • Thank you so much for this post, and for the comments below.

      My own background is complex, with a substantial amount of abuse when I was a child, and then much bullying in school, devastating loneliness, and a subsequent civil war and migration background, including poverty. My health problems are chronic and visible, but such that I am often placed “just outside” the so-called “normal” spectrum (eg when people attribute them to me being tired or clumsy, or a foreigner).

      Except for my finances, which are abysmal, my life now is good and filled with love, much more love than I thought was available for me in this universe. But in the past, I have often yearned for death, and I often assumed that it would be good and merciful to be given a chance to die.

      Not that I ever had much faith in the medical profession as practiced in mechanized, modernized environments; I have always found most official health practitioners to be cold-hearted, administratively minded, enamored with charts and statistics. Certainly I have always found the arrogance of many, even most of those “experts” repugnant, and eugenic arguments enrage me. But I thought that death could provide consolation and a place of refuge from this often terrible world, and my mind seemed set on the question of euthanasia.

      After reading your post (and some other materials), I am reconsidering my opinion. The question of who decides what “worthy” life is, and how they implement the consequences of the decision, is paramount.

      The bottom line is — there is an incredible amount of cruelty underneath the surface, and doctors, nurses, administrators and politicians enamored with money and power have no right to decide who is to live and who is to die. I mourn the victims of these horrible crimes just as I mourn the suffering of people who have been abused as children. Many greetings, in love and solidarity.

  10. Pingback: My Favorite BADD 2012 Posts | The Notes Which Do Not Fit

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