Feeding tubes and weird ideas

My favorie BADD post: Tube-ageddon.

I haven't had much time to write anything here about the hell I went through getting my GJ tube. I had every indication for a GJ tube. I had gastroparesis so bad it was starting to affect my breathing, in a way that doctors said was likely to result in infection after infection until I died. From the emergency room onward, doctors were saying my best hope was to get a feeding tube.

Yet the pressure I got from doctors, while in the hospital for one of those infections, was to just keep getting infections, go home, wait to die. Most of them wouldn't say that outright. But some of them did. Some of them we confronted and they absolutely agreed that the only alternative to the tube was death — which could have happened to me by now, without the tube. But they still insisted on telling me not to get the tube, basically that I was better off dead than with a tube. We had to rally a bunch of people on the Internet to call the hospital before they suddenly changed their tune. My pulmonologist told me she could tell exactly when I started getting people calling the hospital, because the tone in my charts changed instantly to “let's get her the tube after all”.

Most people think of all feeding tubes as the same, all reasons for getting them as the same, and so they believe in false generalizations about their capacity to prevent lung infections, or indeed cause them. But they aren't all the same. They're all different, and the reasons for getting them are all different.

I have gastroparesis. That means my stomach is partially paralyzed. In my case it became severe before it was diagnosed last year and confirmed with testing this year. It's probably due to neuromuscular problems inherited from my mother, who has autonomic neuropathy among other things, a common cause of gastroparesis. My symptoms are similar to hers so doctors are assuming whatever we have is related. Anyway, it makes food remain in the stomach a long time. After awhile, this means that you can't eat very much and you drop a lot of weight. (I may still be fat, but they tell me by the end I was burning muscle.) by the end I was having trouble keeping down two small cartons of Boost a day, which isn't enough calories to live on. I was already on a liquid diet so there was no less food I could keep eating.

It also meant that the stuff staying in my stomach was riding up my esophagus again on gas bubbles formed by food sitting in my stomach for ages. I could feel it happening several times a day. I'd belch and food or bile would ride up with it. If this happened overnight, my bipap machine would shove the stomach contents down into my lungs from my esophagus. This began happening several times a week, and from January until March I had about five lung infections requiring antibiotics. I never stopped taking antibiotics, by the time one course was over I'd be on the next. Which is dangerous in its own right.

So when I showed up in the ER a few days after a CT scan showing what they called a “ground glass appearance”, they had no problem admitting me into the hospital, and even in the emergency room they were telling me if I wanted to live I needed a GJ tube. This wasn't news to me. They had been talking about a feeding tube since last fall, when one more nausea med added to the five they'd started me on, made me able to go home without one instead. I'd been discussing with my friends what kind of feeding tube served my needs best as a person with gastroparesis. And the GJ tube had always seemed like the best option.

A GJ tube is like a combination of a G tube and a J tube. Half of it goes into the stomach, which is a G tube. The other part goes into the first part of the small intestines, which is the J tube. The G tube gives you the ability to drain your stomach contents out into a cup, and dump them down the toilet. This means that if you do it often enough, you won't have anything building up in there and going up into your lungs. Right now, even bile and stomach acid can build up to dangerous amounts because of my stomach not emptying often enough, so I take acid reducers and I drain my G tube several times a day.

The J tube portion is the part that stuff comes in through. I eat through it. I drink through it. I get all of my medications through it. This means that nothing has to come in through my stomach. Which means we are bypassing the worst part of my digestive system. Not that the rest of my digestive system is wonderful. My esophagus is slow, my stomach is slow, and my bowels have been producing blockages since I was a teenager. But with liquid food going into my small intestine at a fairly slow rate (one feeding in roughly twenty four hours, I wasn't able to handle the twelve hour version without getting very sick) I seem to be able to handle things much better than when it was going in my stomach. I love it. It's so much easier than feeling horribly sick all the time.

I still take nausea meds, but half of them have been changed to PRN instead of daily. So daily I take Phenergan, Reglan (which speeds up my digestive system), and Marinol. And I can also take Benadryl. Lorazepam, and Zofran as needed. I used to have to take all six of those things every day, so this has really cut back on the amount of medication I need, which is good because every single one of these meds is severely sedating and it was badly affecting my ability to think straight. If I were still trying to eat, I would be taking every single one of those nausea meds at the maximum dose, and still wouldn't be able to eat enough to maintain my weight.

[Photo of me holding my tube. The J tube section is visible, the G tube is hidden behind my hand, and there's a little cloth thing from Trendie Tubies around the base, with owls on it.]

But I had to fight for this tube. Even though it was the only way to save my life. I had to fight against people who were certain I was better off dead. And I needed the help of a lot of people on the Internet, to do it. When I did get the tube, it was done without a working anesthetic. And even though the local anesthesia didn't work on me, even though I was yelling and screaming, they didn't stop to give me more, they just kept telling me that the Versed meant I wouldn't remember it later. Yeah right. It seemed like the entire process of getting the tube was one giant clusterfuck after another, and like people were making it as hard for me as they possibly could. (Later, when I had to get the tube replaced, we discovered that Propofol is the med, in combination with others, that really does the trick to keep me unaware of what's happening.) They treated me like a child, repeatedly expressing the fear that I would pull the tube out like young children often do, and blaming me when part of the tube got lodged inside me, probably as a result of over zealous physical therapy early on that was a clusterfuck in its own right.

But I got the tube and I couldn't be happier with it. I feel happier and healthier. After aspirating reflux several times a week for months, I haven't aspirated a single time in the month or so I've had the tube. My nausea is well controlled. My brain and body work better. Despite a couple complications since then, it's still the best thing medically that's happened to me in the past year. And I'm still alive, which even by now I might not have been if I kept getting infection after infection.

[The x ray showing the tube inside my body.]

Why did I have to fight so hard for it? I see two major reasons. One is that I'm perceived by medical professionals as someone whose life doesn't matter much, doesn't have much quality of life. I'm autistic, they read me as severely cognitively impaired, I am in bed all the time, they don't see that I enjoy living as much as anyone else does, and they make that decision somewhere in their heads without even noticing.

The other reason is the way medical professionals see feeding tubes. I've been trying to read the writing of nurses and doctors to find out their views on these things. Not just the horrible ones. The ones who snark at patients on their blogs. But the ones who think they're compassionate and sympathetic and good at their jobs. But in one area that makes no difference:

They all think of feeding tubes as the beginning of the end. They see getting a feeding tube as the first sign that your life as over. Possibly that you belong in a nursing home, as if anyone does. When I made out my living will, the first question of “Where do you draw the line where you want to stop living?” was whether I wanted to live if it meant I needed a feeding tube. They see people with feeding tubes as the first stop on the route to a living death. Other things they see that way are using a ventilator, having a trach, needing any sort of similar mechanical assistance to survive.

My friends see it a different way. They see me as some cool kind of cyborg, with the oxygen, the feeding tube, and the Interstim implant that prevents spasticity in my urethra, allowing me to urinate. They say the sounds my oxygen concentrator makes sound almost steampunk. But then all my friends are disabled, they see adaptive equipment as cool, and as a means to living, not a sign you're dying.

Medical professionals have been shown time and time again, to rate disabled people's quality of life lower than we rate our own quality of life. And yet time and time again, they see themselves as the experts on what our real quality of life is. One reason I try to keep my lungs and my guts in good condition is that as a person who is autistic and physically disabled, I know that if I ever got bad enough to need a transplant, I'd probably die. Because they would take one look at how I sound on paper, and they would decide my life wasn't as worth living as that of a twenty year old who wasn't disabled except for the effects of their lung problems or digestive problems. (Lung transplant is the end of the line for severe bronchiectasis. My bronchiectasis is mild, I'm working hard at keeping it that way. Transplant is also the end of the line for very severe gastroparesis combined with other gut problems. I'm hoping I don't get to that point despite severe gastroparesis. Given how hard it was just to get a feeding tube, which is the standard treatment when you start aspirating this much and being unable to eat even a liquid diet, I don't know that I stand a chance at making the transplant list should I need one.)

I also had trouble getting home. People were asking me if I belonged in a nursing home, or at least in twenty four hour care. I'm not sure why. It's not like it's hard to care for a GJ tube. It's unusual, but it's certainly easier than my old med regimen, which was truly difficult and time consuming. Now we just mix them up, put them in a syringe, and stick them straight into the tube. Easy. Eating is easier too, no more worrying I will throw up, and you only need to set up the food once a day and press a button on a feeding pump. But everyone has this illusion that it's incredibly difficult, and the VNA loves to take people with tubes and stick us in nursing homes claiming they can no longer care for us on the outside.

[The feeding pump on an IV pole with the food (Osmolite, low fat, high protein, no fiber) hanging above it.]

I still don't understand what the big deal is supposed to be. By the time you get a feeding tube, eating is really hard. Either you're having swallowing problems, or something is wrong with your stomach. In my case, my stomach was emptying so slowly that I was constantly severely nauseated no matter how little I ate, I was dropping weight way too fast, and I was aspirating reflux caused by all the food sitting around for ages. I was quite possibly going to die from repeated infections. How the hell is a feeding tube supposed to be worse than that?

I can't even begin to comprehend the fear of these things. I mean I literally can't do it. It makes no sense. It's all based in prejudice. It has nothing to do with the reality of a feeding tube.

I thought the worst part would be not being able to eat. The most I can do is drink a tiny bit of ginger ale, and I have to be very careful even with that. But I don't miss food. The feeding tube ensures that I am never hungry, and always have the nutrients I need. The only times I have ever started craving food, were two separate days where I spent all day at the emergency room unable to use my tube. Each time I came home and wanted to eat or drink something I didn't normally want to eat or drink. But when I'm getting food regularly, it's not a problem. I barely miss eating at all. I never even think about it. Even the vivid dreams I'd been having about all different kinds of food, all those months on Ensure, have gone away. My body seems perfectly satisfied with what it's getting, and it doesn't crave things unless I can't use the tube.

And it makes everything easier. Food is easier. Medication is easier. Absolutely nothing is any harder than normal. It's more like dealing with something easy and mechanical, than dealing with anything hard. We did learn the hard way to flush it with coke after every medication, because by the time there was a clog, you couldn't get enough coke in to dissolve it. So we are dissolving the clogs before they can even form, by leaving coke in for awhile after every single time we use meds. I've also discovered it's possible to reduce the pressure inside me — which can prevent the meds and water from flowing into me as easily — by relaxing my body, especially my rectum, and then everything usually flows in pretty easily. So there are a few tricks, but it has overall been much easier than my life was before I got the tube.

So what is so scary? I don't know. I can't find anything at all scary about this. It doesn't mean anything horrible. It means I'm alive. Being alive is a good thing. I don't fear death, but I only get one chance at life, and I don't want to die just because someone else has decided my life isn't worth enough to them. And so I'm very much interested in anything that will keep me alive longer, whether it's a feeding tube or any other “scary” device used for keeping disabled people around longer than used to be possible.

A lot of people I know have those devices, the ones that medical professionals think your life is over. Feeding tubes. Trachs. Ventilators. Catheters. Ostomies. Central lines. All those things that seem to scare people to death, even though there's nothing scary about them. They prolong life, not end it. And I'm furious at every single doctor who urged me to go home and die rather than get this feeding tube and get a chance to live longer. That is simply not their decision to make, and they were bound and determined to make it for me until I got enough people on my side to convince them that the entire world was watching the crap they were trying to pull.

I am going to work as hard as I can, to change hospital policy so that nobody gets pressured in the way I did. It's incredibly difficult to deal with pressure to die, when you're already sick and exhausted and have no energy to fight back. And they do it in sneaky ways, so that if I had been delirious or something, which I often am in the hospital, I might not have recognized what they were trying to do. My experiences are far from unusual, many disabled people have been encouraged to die rather than get a feeding tube, or a vent, or something else that would allow us to live. My mother, who has many of the same conditions I do, is going through a mess where doctor after doctor refuses to treat her or perform surgery on her, and she keeps having to go back to the Mayo clinic because they're the only ones who seem to be committed to making sure she can live as long as possible. And as a disabled senior citizen way below the poverty line, she gets the “your life isn't worth it to us” thing from at least three different angles. This stuff isn't unique to my life, the pressure to die is everywhere.

But most disabled people, like most people in general, prefer to be alive. Being disabled rarely changes that fact, not on its own. And the fact that anyone thinks we ought not to, that their pity goes so far as to be a death wish aimed at another person, is so disgusting I don't even have words for it. But they are the ones who are disgusted at my advance directive, which tells them to keep me alive no matter what. I can hear it in the sound of their voice when they ask me about advance directives. Advance directives are supposed to be about making your own choices, but the choice to live is the least respected among them. They would rather I not be here by now, rather I got my sixth, seventh, eighth infection until my lungs finally gave out. I refuse to give them the satisfaction. I love being alive and a tube doesn't change that one bit, in fact it makes my life better.

 

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“I don’t know that person’s program.”

That's a sentence I've heard a lot. And when they don't say exactly that, they say things that mean the same thing. Usually in the developmental disability system, for some reason, although I can easily imagine it in other contexts.

What it really means:

“DD people aren't like regular people. When people do things to them that would be horrible if they happened to other people, there's always a logical reason that justifies whatever is happening. Staff and case managers rarely if ever abuse power. All of their decisions have the best interests of clients at heart. So if something looks terrible, chances are that there's a reasonable explanation behind it. I just don't know what that explanation is. And I likely never will, so I'm not going to judge.”

They say this when staff scream at an old woman with an unsteady gait every time she falls, and refuse to help her get back up or allow her to hold onto things for balance.

They say this when staff publicly humiliate a man who clearly has trouble moving to avoid obstacles, when he accidentally bumps into someone.

They say this when staff do their best to keep a boyfriend and girlfriend apart. Or when staff are okay with boyfriend and girlfriend, but balk at the idea that two women with intellectual disabilities have fallen in love. As if it's even their job to decide who can love who.

They say this when parents simultaneously put on a big public show of wishing their son could move out on his own like he wants to, but sabotage his every attempt to do so. Because they had planned out a whole life for him in the group home they run, and can't handle the idea that he doesn't want to live under their control the rest of his life.

They say this when a staff person kisses a grown man's leg and says “I kiss you boo boo aww betta!” in baby talk.

They say this when, in the name of integration, staff prohibit disabled people from speaking or socializing with each other. I just saw an instance of that last one, which is why I finally remembered to write a post on the matter.

They say this when we get outright tortured. Tied down. Skin shocked. Slapped. Pinched. Made to smell ammonia.

I wish I could upload the scenes from real life that play out vividly in my head. But like as not, people likely to say these things wouldn't consider me a reliable observer. They never do, when you start pointing out the truth. When you see yourselves as people. With all that this means.

Suddenly you are either too severely disabled to understand what's happening, or you're not disabled enough to grasp why treating people like dirt is necessary. Or both at once. And they'd much rather you were highly submissive, maybe even the really cool type of client who helps staff out by giving them information about other clients.

All of this requires seeing DD people as less than. It just has to. There is no other way to justify these actions towards us.

And I know how people see us. As in, I know what we look like inside their minds. Sometimes we're human — almost, anyway. Not quite. There's something vitally important inside every real human. And to them, we either don't have it, or are missing large chunks of it. So we go around in human bodies but there's pieces missing in our minds and our souls. Even people who don't believe in souls in any religious sense, still perceive something inside us as only partial.

I know this because this is one of those viewpoints that isn't content to stay in the minds of others. It tries to force its way as deeply into us as it can manage. Until many of us look in the mirror and see only part of a person.

I can't describe the violence that involves. It's horrible. And a whole system of relating to us, forces its way into our lives. It tells us that we are taken care of, that we can relax, go to sleep, almost. And then it suffocates from inside. There's no words for it.

I suspect the drive to say this about people comes from several places at once.

If you work in the system, there's not wanting to see yourself or your coworkers or people who could be you, doing something horribly wrong. Much less on a regular basis.

I also suspect a strong desire to trust the society they live in, not to do horrible things to people. Or at least, not to do horrible things to certain kinds of people.

A member of my family once told me that it took him a long time to believe what happened to me in mental institutions. He said that in order to come to terms with the reality of the abuse, he had to destroy a strong desire to believe that the society he lived in was safe and just. Him telling me that was far more honest than a lot of people are.

That desire to trust society gets in the way of understanding every kind of injustice. I am amazed that people trust a society that does its best to shut out and destroy all but a handful of people. But they do.

And not seeing us as quite exactly people, is the one thing that you can't avoid if you think like this. Because if you see us as people, you have to see what happens to us as dreadful. And you don't immediately, upon being told of the latest awful thing, say any variant on “I don't know that person's program.”

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BADD: Pulling Back Curtains

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.

Regarding Neli Latson

(For those who don’t know, he’s a guy who was arrested for sitting outside a library while autistic and black.)

Before I even heard much more of the story than those details in the last sentence, I wrote the following:

And the guy’s both autistic and black. In America that’s two counts against you and cops have been known to make up stories in either case and outright kill both disabled and black people who have not assaulted anyone and then make up some “well he was violent/he LOOKED violent” thing to cover their own asses. And as an autistic person who has been in similar situations (had the cops called on me multiple times for sitting and waiting outside for people, walking down the street, and other major crimes) the cops don’t even always approach you from the front. And if someone grabs me from behind without warning I am going to fight back because who knows it’s not a rapist and my reflexes work like that.  Because I’m female and white and a crappy fighter (at least that’s my guess) I’ve been either detained in the police station or institutionalized as a “danger to others” at that point (after fairly nasty but not life-threatening treatment by the cops) rather than jailed or shot.  So far. But I can completely imagine that being me, and when it’s the cop’s word against yours weird things happen. (And don’t get me started about the “psycho” and “retard” jokes I hear cops swapping at times like that — including the time I was picked up as a missing person for something as benign as running away from a day program after a fistfight broke out, which I still see as a reasonable response.  They do not value us highly.  Not enough of them anyway. Dennis Debbaudt is the exception.) 

And, surprise, when more details came out, he was grabbed from behind and threatened with racist language. How did I know this? From spending my life since adolescence in situations where cops have been called on me. In all but a couple instances all I was doing was sitting down outside, or walking down the street (the exceptions involved a few times when I screamed and one time I was trespassing, but mostly it was just sitting or walking).

As for how he remembers these things so vividly, first off lots of autistic people have good memories (or good memories when the right thing triggers them, as in my case). Second off, these sorts of events are pretty effing memorable. I can still remember details of similar instances over half my lifetime ago.

If you want to know more then google it. I don’t have any links handy and I’m posting from my iPod. Comments on this entry will be heavily moderated, people wanting to express the idea that this didn’t happen or that this doesn’t happen can go to any of the huge number of websites out there that welcome that sort of thing. And such people deserve a wakeup call about what life is like for those of us who have any (or all) of a number of differences that are obvious enough and devalued enough to get this kind of crap. But if that’s you, this incident has me utterly furious and I’m writing to a deadline which already makes me crabby so just go away.

Edited to add: makoto/pome has commented with several links:

Here’s some links for people:
http://autism-news-beat.com/archives/1146
http://autism-news-beat.com/archives/1137
http://www.huffingtonpost.com/ken-reibel/teen-with-aspergers-arres_b_610530.html?page=2&show_comment_id=50670437#comment_50670437
Audio interview of Latson’s mother:
http://www.blogtalkradio.com/aut_toknow/2010/06/20/lisa-alexander-from-a-voice-for-nelifight-against-
A web page she has set up:
http://avoiceforneli.com/

For Sharisa, and anyone else facing attempts at erasure.

I wrote a version of this once for Sharisa Kochmeister, who was dealing with people trying to publicly erase her existence. But when I write it now, it is intended for anyone dealing with such attempts at erasure. I am writing it because it gets right down to the core of the problem, rather than getting lost in details thrown around by those attempting the erasing, the ones they will try to distract a person with. I am writing it because I know several people right now, Sharisa included, who might need to remember this:

Remember that when they attack someone you are not, they are not attacking you. They are just attacking something they think is you, an illusion in their heads.

It can harm you, because it can make people mistake the illusion for you, and they can act badly towards you based on that. And there is real danger, and I don’t want to downplay that.

But at the same time, they are hacking and biting and tearing and clawing away at a person who doesn’t even exist, someone they dreamed up in their minds. In the larger scheme of things, they can’t touch you, because they can’t even perceive you as you are.

Hate can’t understand love. Hate isn’t an action, it’s a state of mind. People in that state of mind are more thoroughly harmed by the hate they envelop themselves in, than the people they try to attack. Hate pulls a person away from reality. You have to be able to love in order to see who someone really is. A person enveloped in hate can’t do that. So all they are doing is ripping at all sorts of illusions they build up to surround you. You will remain standing even if they shred those to pieces, even if in fear you mistake those pieces for you at times.

I know how hard it is. I also know that when you go through things like this you often find out you’re stronger than you thought you were. Because any strength you have comes from something that nobody who hates you (and I tend to think attempted erasure of a person’s existence is the ultimate hate) can touch or even see.

It comes from the fact that you are a real person and nothing anyone does can change that. You don’t even have to try to exist in order to exist, you just do it automatically. Hate on the other hand takes constant effort, to push oneself away from reality, and to fight against what does exist. Hate will wear a person out. Simple existence will not.

I hope for their sake that the people attacking you learn how destructive hatred is to the person stuck in it. It can happen. I have seen people make that change, it is hard but their lives and the lives of those around them are better for it. But even if they don’t, I know that you will be okay, because you will still be there. You are not the imaginary person they are ripping apart, half plaything and half punching bag, and you are not just words on a screen or an example or symbol of something people have imagined up in their heads. And you never will be. You exist, you are a real person, and nothing can change that.

On a similar topic, you might want to read Cyber Bully by Donna Williams, which contains the excellent advice:

I don’t know where they get the time. It must rob their own families of quality time. And how can they escape that head space of militancy and hatred to really be accessible as parents, friends, brothers, sisters. In the end, their lives are suffering and they don’t even know it. They put so much passion into their cause in going after people, that it gets like a drug to them, and they are probably as available to their own families as an addict is when having a primary relationship with drugs. So as much as its really scary to find anyone pathologically fixating on me, in the end, whatever discomfort they cause me, I know there’s must be greater. Addiction is incredibly hard to live with and when these people think their addiction is their selfhood, they are far from any place of hope. Number 1 rule, no matter how personal they make it, don’t take it personally.