Tag Archives: Disability

Feeding tubes and weird ideas

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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.

 

A bunch of stuff that needed saying

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The following stuff is important stuff I wrote elsewhere on the net. If some of what I'm saying doesn't make sense, ignore it, it's just context that I'm not able to describe right now. The main thrust of what I'm saying should make sense without understanding the full context of what I wrote. And I can't rewrite it all right now for this blog. So the following is pretty much as I wrote it. Also sorry for all caps in places, it was because where I was writing it I couldn't use other forms of emphasis. And please don't assume that this is all about autism. Everyone always assumes that everything I say is all about autism. It isn't. Most of it isn't. Not even the stuff that talks about autism is all about autism. I am fed up with just about every such assumption because my world isn't made up of only or mainly autistic people and when I talk about things I always get replies saying “This applies to people without autism too” and I want to say “no shit Sherlock, that's what I meant in the firs

This turned into a long post, and it may not apply to the people I’m replying too, but this conversation just brought up a lot of things I’ve been thinking but having trouble saying.

Thank you for writing that. It’s really important.

Also another point I want to make. There are many autistic people whose best method of communication is nonverbal. By which I mean, not speech, not writing. Some of us this is true of, can communicate well by speech or typing also. Some of us can’t. But we usually have trouble with receptive language — either some of the time, all of the time, or especially, during the early formative years of our lives. I’m one such person.

Most people don’t know this because the current theories of autism all involve us being terrible at nonverbal communication. By which people mean, terrible at one specific kind of nonverbal communication that most nonautistic people are good at. Also, most autistic people who can talk about their experiences in words, are (or believe themselves to be) bad at nonverbal communication, and their experiences get seen as applying to all of us, when this is not true.

So for many of us — nonverbal communication, and the world of things outside of words, are our best way of communicating. Whether we can also use words or not. I wrote about one such group of autistic people in my contribution (“Untitled”) to the Loud Hands anthology. Because I want people to know we exist. Because I want other people like me to know they aren’t alone, in an autistic community made up mostly of people who experience themselves as terrible at nonverbal communication. Where people even say that autistic communities are communities where people can use text or other forms of language, rather than having to deal with nonverbal communication. Even though there’s plenty of us who do better in person, BECAUSE we communicate best nonverbally, because words, whether we can do them or not, whether we are or seem good at them or not, are so hard and so difficult and so painful to keep using.

There are entire groups of autistic people out there who communicate with each other using our own unique forms of body language that are different from nonautistic body language, different from other autistic people’s body language, specific to ourselves, specific to each other. Who communicate best reading each others writing, looking for the patterns that exist between the words, rather than inside the words themselves. Who communicate best by exchanging objects, by arranging objects and other things around ourselves in ways that each other can read easier than we can read any form of words. Who share the most intimate forms of communication, outside of words, outside of anything that can be described easily, in between everything, seeing each other to the core of our awareness. Who see layers upon layers of meaning outside of any form of words.

In “Untitled” I was writing about my favorite communication ever, my video chats with AnneC (and her cats, when they show up, which Shadow absolutely loves communicating with me over video and reminds her every Friday at the right time because he loves it so much). I don’t necessarily do the best at visual stuff the way most people think of it. But I can see the patterns of movement in other people, including cats, whether or not I see them well in the usual forms of visual perception. And those patterns of movement tell me more than any word ever could.

I can even read nonautistic people fairly well at times — just not in the ways nonautistic people read each other well. That’s one of the problems with nonautistic research into autistic people’s abilities to understand nonverbal communication. Most of it relies on the understanding and use of words at the same time as understanding the nonverbal communication. And most of it relies on the kinds of nonverbal communication that nonautistic people are most aware of. This frustrates me to no end — how can people research forms of understanding that they don’t themselves have and therefore they don’t themselves understand even exists? I’ve actually told researchers ways they can research autistic people’s understanding of nonverbal communication without having to resort to the faulty methods they usually use.

And one researcher told me, when I asked, that every parent of an autistic child she ever met said that their child picked up easily on things like stress in the household, but that SHE ACTUALLY DISREGARDED IT UNTIL I ASKED HER, BECAUSE SHE’D BEEN TAUGHT THAT AUTISTIC PEOPLE COULDN’T READ BODY LANGUAGE. I’m totally serious. If researchers are that biased themselves, how can they possibly hope to even notice that we can understand things they assume we don’t understand?! I taught that researcher a bunch of very simple ways to test that without relying on the painfully stupid research methods that guarantee researchers will find only what they expect to find — relying on us to use and understand words, relying on our understanding of actors and stage conventions rather than real people’s real nonverbal communication, relying on nonautistic people’s limited ability to read autistic body language, all sorts of other flaws that seem obvious but that researchers themselves seem never to notice. So hopefully she will set up some real experiments that show our real abilities.

Anyway. Back to what I was saying. There’s entire subgroups of autistic people out there _ not just my own — who rely on nonverbal means of understanding the world, and nonverbal means of communication. That’s one reason I usually put myself in my videos — because I know that certain other autistic people will be able to read me like a book, even if nonautistic people usually can’t. And that nonverbal communication is a crucial part of my videos. (See why the entire first half of “In My Language” has no words in it. I was trying to make a point about the best way I communicate, the best way many people communicate, autistic or not, verbal or not. Mostly lost on people, who think it’s a video about autism. It’s not. It’s a video about communication and understanding and personhood, that happens to be made by an autistic person. Big difference. I told CNN why I really made the video, and they left out that part of the interview in favor of putting their words in my mouth. I think my real intent was too political for them.)

Anyway. I may be a writer, but my real best form of communication has nothing to do with words. I use words because I have to. Because most people won’t understand me if I don’t. I don’t use them because I like them, or because I “can’t do nonverbal communication so text is best for me”, or any of the usual reasons most people assume. If I could never use language again, spoken or written, I would be really happy. But the world won’t let me do that, so I carry on using a means of communication that is outright painful for me.

I don’t know the people in the video, but I know that the way their bodies move makes intuitive sense to me and communicates things whether they intend it to be so or not. (The forms of nonverbal communication I understand best are unintentional, in fact. That’s one reason tests using actors don’t work on me. I know an autistic woman who failed a test of nonverbal communication because it used actors and she kept describing their real feelings instead of their acted ones. What this says about nonautistic people’s understanding of nonverbal communication is… interesting.) Whether they are able to use spoken language or not, the video would lose a lot if it only relied on showing them speaking or typing the words.

And I really dislike a lot of the self-advocacy movement for relying mostly on the self-advocacy that happens through words, written or spoken. This leaves out people who can’t do either but who are nonetheless quite capable of advocating for themselves through their actions and movements. If I hadn’t spent a lot of my life forcing myself to do words, I might be such a person, so I am always aware of this. Words are not natural to me the way they are to some autistic people. They’re difficult and my development could have gone either way. There are also people who, no matter how much effort they put in, could never have used or understood words, and they are also extremely important, and they are also capable of self-advocacy, and they are still capable of communication that is more full of meaning than the communication of many people who use words.

I wish there were videos using their communication — which by definition wouldn’t involve words. Both people who would have been able to use words had they put in a crapload of effort at critical times in their development, and people who would never be able to use them no matter what. Such people exist. I sometimes wonder if they are too inconvenient for some autistic people to remember. I hate when people tell parents, “If you just gave your child a communication device they would be able to type words (or use picture symbols) and everything would be solved.” You don’t know that. You just can’t possibly know that. I hear that a lot, this idea that autistic people would all be able to communicate in words if only they were given a means to type them instead of speak them. And it’s so not true that its utterly ridiculous. I hear it both from people whose main way of communicating is speech, and also from people who use typing, and people who use both. It’s wishful thinking and it’s not true. There are people whose understanding of the world is just like a typical “aspie” except they couldn’t speak for motor reasons, and they are the most likely of those who use typing, to believe this myth.

Reality is that there are lots of people who will either never be able to use words, never be able to understand words, or both. Or whose use or understanding is so limited that they will never be able to use words as their primary means of communication. But they do communicate, whether the communication is intentional or not. And they do matter. And they are capable of self-advocacy. And they should be included in self-advocacy movements if those movements ever expect to represent autistic people, developmentally disabled people, cognitively disabled people, disabled people in general, whatever group is trying to represent itself in that movement. And in order to include them, you have to show their movements and their sounds and all the things they do that aren’t words.

It’s true that many people who are thought not to be able to use or understand language, actually are. And it’s terrible that they are overlooked. But in their desire not to overlook such people, many people claim that all disabled people who can’t communicate through speech fall under this umbrella. And that’s simply not true. In order to communicate with people who will never use words, you have to learn their language. (And surprise, that’s one thing that “In My Language” was actually about. And it would be about that whether I used typing or speech to communicate — either one would be my “second language”, and as such I can easily, easily envision a situation where I never learned and never would learn to use speech or typing, both of which I used at different points in my life.) And each person has one. Sometimes several people have a language that is in common but is not words. Sometimes each one has a separate way of communicating that is not words. But either way, you have to learn how they communicate, not force them to either communicate how you best communicate, or else be considered “non-communicative” for the rest of their life. And yes it’s possible to get consent to use their communication, it’s just sometimes harder work than asking a yes or no question in words.

And a community that doesn’t include such people isn’t my community. The developmental disability community is far better at including such people than the autistic community is, even though not all of the DD community manages it either. One reason I’ve spent a lot of time communicating with people who can’t use words in any form is because I’ve been in the developmental disability system for pretty much my entire adult life and have spent a lot of time with a wide variety of people. And I’ve spent a lot of time communicating with people who can’t and may never use speech or typing or even picture boards. And that’s something that certain segments of the autistic community are sorely missing. Even parts of the autistic community that involve people who don’t use speech, are often made up of only those people who were able to learn typing, and often put forth the (false) idea that everyone could learn typing if only they tried hard enough or were exposed to the proper teaching methods.

The response someone made is true: Some of the people in the video use typing, so they could never be shown speaking the words in the video. But I’d like to go further than people who use speech and people who use typing, because unlike a lot of people, my social world is made up of a lot of people who can’t do either one. And also made up of a lot of people who, even if they can use speech, typing, or both, those are not their best means of communication, and it would be better to show us using our best means of communication rather than merely the form of using words. Not everyone has words but everyone has a voice and a means of communicating. And not everyone who uses words sees words as their primary voice or their primary means of understanding things, and that needs to be respected. And I’m sick to death of spending time in communities where most people seem to miss these facts, and automatically see having a voice as the same as using speech or at least using language.

“I’m the only one who can take care of you properly.”

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“Do you want a full bed bath?” she said. “I'm going to be gone for a full week, and I know you won't want anyone else doing it for you.”

Uh-oh. I made a mental note to ask her other clients if this meant whatbi thought it meant.

I usually don't get an entire bed bath at a time because it wears me out. But that wasn't the issue. I have very sensitive radar for certain warning signals from caregivers. It's a survival thing. And I freak out a little at any hint of “You need me, I'm the only one who can take care of you properly.”

The weird thing about it is she's not even that good at her job. I mean she gets the basics done. But she does a lot of things that seem little and aren't, if that makes any sense.

Like she scrubs too hard, which causes pain and, for people with fragile skin, injury. She isn't able to control where she puts her hands. By which I mean she seriously thinks she's staying within certain bounds and she's not. Which means she gets lotion on my hands instead of just my wrists, which makes my eyes burn when I rub them later on. When she washes my vulva she goes all the way back to my anus despite attempts to stop her, which can cause infections. She can't aim properly when putting anti-fungal cream on, so my skin still burns when she's done. And no matter how many times I tell her to do otherwise, she tries to pull a towel out from under me before I have my pants on. Which can result in Desitin getting all over the bed sheets. She’s also one of the ones who inadvertently claws my vulva and thinks she doesn’t have fingernails.

More worryingly, she can be borderline abusive. You know how people slam cupboard doors and bang plates onto the table when they're angry? She does that to people. It's painful and alarming. She scrubs you even harder, slams your body around, and is generally rough with you.

Even when she's not angry she can be worrying in this department. On days when I'm unable to respond to her or move well, she treats me like I'm an object, not a person. And she can do the same things when in a hurry. It's like we are just things to her, not people, and the more severely impaired we seem to her, the more we are objects.

And she does a lot of things primarily for her convenience. Once she forced someone I know to stand up rather than get the bed bath he needed because it was slightly easier for her, and it exacerbated the injury that put him in bed to begin with. she didn't appear to care.

None of these are the attributes of someone who we all miss when she's not around. Let alone someone we feel we couldn't do without.

But her statement worried me a little. So I asked around. It's handy at times to live in a building where a lot of people have the same caregivers. Especially the people who bathe us, like her. They tend to be shared among more of us because they only come for the duration of the bath and any other personal care they provide.

Anyway, it was not hard at all to find someone who confirmed my suspicions more than I ever guessed. It seems that she has written it into her will that her pets are to be killed when she dies, because nobody could possibly care for them like she does. That's more of a warning flag than I wanted.

People have an obligation to our pets. And part of that obligation is to do everything in our power to ensure that they will have a good life if they outlive us. I know that Fey will miss me greatly, and I hope that she will not try to starve herself if I die. But I have plans set up for AnneC to find her a home or, as an absolute last resort, to take her in until she can find her a home. I would never have her killed just because I was dead.

To kill your pets when you die is selfish and reflective of a really disturbing and warped take on the world. Part of that take on the world is almost always “Nobody could take care of them like I do.” Which is also a huge part of the mentality behind a lot of animal hoarding and other abuse.

It works the same way with humans. “Nobody could take care of you like I do” always results in messed up behavior towards the person in question. It can range from minor abuse and neglect, to murder.

Parents who think nobody but themselves can take care of their disabled children are disproportionately represented among people who murder their disabled children. They often don't seek out help to take care of their children, and don't plan for a future when they are not around for their child. This means that even if they don't kill their child, they're setting them up for the awful situation the parent sees as inevitable after their own death. It becomes a self-fulfilling prophecy. Whatever they believe, this is not love.

And caregivers who think this of their clients can be just as dangerous. At minimum they abuse their power over us. They may try to get us to see other caregivers as not very good. Even when they're better than the person in question. They frequently treat us like things, because to see someone in this way is to fundamentally see them as a thing. And at worst, they too can kill us.

I know a disabled guy who dated a nurse who had this attitude to her patients. He believes she was an “angel of mercy” serial killer who killed several of her patients. (Such serial killers are far more common than the Jeffrey Dahmer types, but receive little attention from the media or law enforcement. Their victims are only disabled people, after all.) She frequently talked about killing all her pets and everyone else who depended on her before she died. He realized she saw him in this way, and got out of the relationship fast.

I don't think that this caregiver kills her clients or anything. And I don't think I'm in any serious danger of more than being treated like an object by her, or else I'd never allow her in my apartment. But knowing this about her means I can be on my guard for more serious warning signs in case she does anything more disturbing.

But in general. Any sign of “Nobody can take care of you like I can” should put you on your guard. It nearly always results in something bad, and sometimes results in catastrophic abuse or neglect, or killing.

“I don’t know that person’s program.”

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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.”

How to solve “behavior problems” without having to learn self-control.

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Many years ago, meetings with my case manager tended to involve shouting and cussing. Mainly on my end. Today, our biggest problem during meetings is whether I'm physically and cognitively capable of holding a serious conversation at that time during the day. I would love to take credit for this by saying I learned a lot of self-control between then and now. But I suspect that even if I have, that's not what really changed things.

Like a lot of cognitively disabled people, I am not capable of keeping track of the dozens of things that have to happen for my basic needs to be met. And I really mean basic: Food, water, clothing, bills, hygiene, shopping, and medical care. Unlike a lot of states, the DD agency here only serves cognitively disabled people — you have to have an intellectual disability or autism, cerebral palsy doesn't count. So you would think they'd require case managers to be organized enough to meet those needs. You would think, but you would think wrong.

My case manager back then was a nice enough guy on a purely social level, but he was not an organized person. At all. So he was able to do a few things, but other than that he gave staff very little direction on how to consistently do what I needed. Meanwhile I was unable to even know most of what needed to happen. So stuff. Very necessary stuff. Lots of it. Wasn't getting done.

This meant that I pretty much lived from crisis to crisis, discovering a different gaping hole in my care each week. My case manager, having lots of power and being unwilling to face his role in these matters, kept telling me that these things were not his problem.

The more time went on, the worse things got, and the less he was willing to take responsibility for what was happening. So he blamed me. Nobody could possibly keep track of this many medical problems and appointments at once. I was unreasonable to expect basic care. There was no possible way to meet the needs of someone like me. I was the problem.

I kind of wanted to survive. So the more time went on, the more often I chewed him out for not doing his job. And the more frustrated I got, the more he treated me as if I was the one doing something wrong. Because hurting his feelings was worse than him forcing me to live in perpetual crisis mode. And it was perfectly reasonable to simply deny I had needs rather than work to meet them, right?

Towards the end, he began to get snippy and snarky. If I brought up anything he wasn't doing, he'd get this twisted smile in his voice and say, “Well maybe your new case manager will be able to do this.” Even I could pick up the implied meaning: that it was unreasonable and demanding of me to expect anyone to do these things, and I would soon find this out when I got a new case manager who would be just as incapable of keeping track of these things as he was. Then I would be forced to admit how impossible it was to meet my needs.

Except it didn't work out like that. At all.

My new case manager was a young woman. She was organized and efficient. And within a month or so, she completely turned my life around. I could finally rest, because I no longer had to keep a constant lookout for things going wrong.

And my reputation changed. Suddenly they considered me reasonable, polite, and civil. They acted as if I was the one who had changed. But I wasn't. What changed was my situation. It's hard to be nice — hell, literally fatal to be nice — when it's your life on the line, when there's a different crisis or three every week.

Yet that's exactly the position a lot of agencies force disabled people into. They don't provide adequate case management, and the outcome becomes our fault. We are forced to fight for basic necessities. When we do fight, they take that as evidence that we are capable of keeping track of our own needs without any extra assistance. We become not their problem.

From what I've seen, a lot of disabled people die this way. With help from friends, I've been able to catch situations like that. But not all the time, and not before the situation becomes dire. The amount of emergency room visits I used to have due to dehydration alone is astonishing compared to what I have today. It used to be routine for me to get fluids in an IV on a regular basis, because nobody was helping me drink water or Gatorade.

So the situation becomes this: If we don't speak up, they presume everything is okay, because if it weren't, someone would say something, right? If we do speak up, they presume everything is okay, because speaking up proves we are competent to track these things and direct support staff on our own. Plus,if we spoke up in one instance, then our failure (inability) to speak up in other instances means nothing's really wrong, because if it were, we'd say something. “You're such a good self-advocate,” they say, when they really mean “If there was another problem, you'd say it.” If we routinely end up in severe medical trouble, that's only to be expected given how many medical problems people like us have.

Needless to say, my being alive at the moment owes a lot to coincidence.

They also take signs of desperation as just happening, with no context attached. So our justified terror and anger become behavior problems, or psychiatric disorders. Or it's just part of who we are to be demanding or nasty. I'm still not certain my agency perceives the change in my behavior as a response to a change in context. They probably think I mysteriously learned self-control, or finally matured past being demanding.

No. My needs got met. That's a huge difference between that, and some kind of change on my part. If they went back to screwing me over and blaming me for the consequences, I'd probably go back to yelling at them.

Communication page I used to handle that invasive woman I met.

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It’s been quite some time since I posted my letter to the woman who accosted me on my way to the para transit van. But I wanted to update people on how I handled the situation when she approached me the next day. Which was a success.

I knew that I have trouble coming up with new language of any kind in high stress situations, especially involving people with bad boundaries. So I spent most of the night creating a new page for my communication software.

I use Proloquo or Proloquo2Go for most of my communication these days. My super-expensive, clunky Dynavox has been collecting dust in a corner ever since I first got Proloquo2Go years ago. Proloquo2Go has two separate sections. One where you type and it speaks out loud. Another where you can say something by pressing on one or more pictures.

I created a page where everything was about boundaries in one way or another. These are things I’m often unable to say in real time. I have a hard time remembering its possible to say these things. And coming up with words. And monitoring my emotions in response to situations. And communicating around invasive people. And pushing words past what feels like a barrier between my mind and everything else. Let alone all this and more at once.

Here’s the page I created:

[Description: A communication page arranged as a grid with one sentence per square. Each one has one word or sentence. Words in parentheses are what the previous sentence is an abbreviation for: Back off. Don't patronize... (Don't patronize me.) Don't talk to me. Don't touch me. Don't want talk about. (I don't want to talk about it.) Fuck off. Get out of my face. Go away. I am not a child. I don't care. I don't do eye contact. I'm not kidding. I've a right to be mad. (I have a right to be mad.) it's not funny. Leave me alone. Now. Please. Stay away from me. Stop it right now. Stop. That hurts my brain. You put me in danger. (You're putting me in danger.) you're hurting me. You're too close to me.]

I tried to make it so that I could use various levels of politeness, forcefulness, and rudeness depending on the situation. One way I did this was with different icons. Obviously, “leave me alone” and “fuck off” are very different. But another way I did it was by adding icons for “please” and “now”, the two squares outlined in blue. This made it so, by hitting two buttons in a row, I could say “please leave me alone” or “leave me alone now”. So I have a pretty good variety of intensity I can use.

I was expecting her the next day. She had said she wanted to meet me in the morning. So I prepared myself. I tried to stay connected and aware of my surroundings. She sat down at the table next to me. And she watched until my staff person had to leave me alone for a minute. Then she approached.

Because I was expecting her, I was prepared for the onslaught people like her carry with them. That thing where when they get close to you, it almost feels as if they are overlapping with you. So in my head I made sure to mentally separate us, which made it easier to communicate. I hit “please” and “stay away from me”. She yammered some sort of explanation and went back to her table.

I maintained deliberate mental distance the rest of the morning that I was anywhere near her. My case manager later made an effort to find her. She’d heard the story from a guy who witnessed it, and she wanted to report this woman. But we never found her. And things went just fine the rest of the day.

In any alternate universes where I didn’t make this communication page, the likely outcome is much worse. I would have been pretty much trapped around this woman, and that would have done a kind of emotional damage that takes time to recover from. It’s nothing that has any kind of official name, it just leaves me more vulnerable to other people like her until I can reverse it.

Another important thing I did besides create the communication page, was to rehearse everything many times beforehand. If I don’t do something like this, it’s hard to use the communication icons. Contrary to popular belief, just having the ability to type or use icons, doesn’t solve every communication problem.

And without rehearsing, there’s a big chance I’ll never use a page like this. My fingers won’t know where to go. My mind won’t remember it’s possible. My eyes won’t remember to look through the page to find possible things to say. My will won’t be able to push through the barrier between experience and expression. And much more. That’s a lot of places for communication to break down.

It is absolutely vital that people who use communication devices, have ways to respond to violations of our basic boundaries. Disabled people are far more likely than others to have others behave invasively with us, ranging from subtle to violent. People teach us from our earliest years onward that such invasion is normal, natural, and something we should accept without complaint. We have to have the means to say no.

And we have to have the means to say no forcefully, even rudely. We need to be able to use cuss words, even if we have the kind of personality that would never use them. Sometimes the only reason that we appear unnaturally even-tempered is because we’ve never been allowed to be otherwise. We have the right to say fuck off, but people don’t always give us the ability to do so.

Of course, even if we say things like that, there’s no guarantee anyone will listen. Some people’s reactions when I get mad, remind me of the way people giggle at my cat when she swipes someone who touched her in a way that hurts her. It’s like she and I aren’t real enough to them, so our anger is cute and funny.

I’ll also never forget the time someone made an asinine comment when I was out in public. I typed a response and stuck the speaker up to his ear so he could hear it. All his friends burst out laughing. One of them said “Dude, that guy’s cussing you out using a machine!” Which is… so much not the response I was going for.

But still. We need to be able to have the full range of responses that other people can have. To do otherwise smacks too much of that idea that we should be passive and sweet all the time. Being able to say no, being able to cuss, being able to tell people to go away and leave us alone, these are some of the most important things people with communication impairments can learn to say. But often people don’t teach us that stuff, they don’t want us to know it.

Another important thing: Communication pages like this are not just for people who absolutely can’t ever speak. They are for anyone, anywhere, who for whatever reason would be unable to say things like this in situations where they need to be able to say it.

I’ve run into too many people lately who desperately need something like this, but are afraid to use it because they don’t fit the popular image of someone who needs a communication device. Some of them have even been told that it’s horrible or disrespectful of them to even consider using a communication device. But my position on it is that having the most effective communication method possible can result in better emotional and physical health, in some situations it can even save lives.

So given all that? If something like this can make your life better, for any reason at all. Whether you can’t ever speak, can only sometimes speak, can only speak about certain topics, can speak but it isn’t what you mean, can speak but typing or using picture icons works better or uses fewer mental resources. Or anything else like that. Do whatever works best for you, and screw anyone who tells you different.

Anyone who feels the need to act as the supreme gatekeeper of all things assistive technology… not only do they have too much time on their hands, but they are letting ideology get in the way of real people leading better lives. And that is just plain wrong, and fundamentally unfair to people who could benefit from a communication aid.

 

To the woman who accosted me on my way to the para transit van tonight.

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I agreed to meet you tomorrow.

That was before you made it clear that I really do not want to meet you tomorrow.

It is not ever okay to demand that I look at your face, especially not by getting in my face. For the record, I didn’t see your face even when you did that. I saw a weird swirl of blue and brown. Since your skin is pale and you have blonde hair, I’m pretty certain none of that was your face. That’s what happens when you seriously overload a person with bad visual perception. I was using those eyes before you wrecked them like that.

It is never okay to demand that I hook pinkies with you and “pinky swear” that I remember your face and will meet you tomorrow. Especially after I have done everything in my power to pull away from you when you held out your pinky in ever more intrusive ways.

It is not okay to then, after I have had a clearly negative reaction any time you got near me, come after me and demand a high five.

Most of this conversation happening in the tone you use to talk to a little kid.

It is doubly not okay to respond to my terror and attempts to back away from you and cover my head and face, by saying “YOU SHITHEAD!”

To be perfectly clear:

I do not want to meet you tomorrow. Or ever.

I do not want to talk to you.

I do not want to touch you.

In fact, of the three, I want that one the least. So don’t, ever, make another attempt to touch me. Don’t lean towards me or get in my face either. That makes me feel like you’re inside me somehow.

Because of you, I may not make it back tomorrow. Not for fear of you. Although that’s a consideration. But rather because your actions turned a good but tiring day into overload and excruciating pain.

My mind is running in circles. I could not answer some very simple questions when I go home.

I was barely able to get to bed from my wheelchair because of your actions.

Because doing that all to me had actual consequences towards my ability to think, understand, and move.

I might not get to sleep in time to go back tomorrow. It takes my brain time to recover from that kind of assault and sometimes it takes that out of the time I need to be sleeping. Or I may be too overloaded by tomorrow. Or too tired. And you would be the main reason for that.

I’m not a child. I don’t pinky swear. I don’t do patronizing sing-song voices. I don’t like to be touched by strangers and I don’t like strangers trying to force me to look at their faces, touch them, or promise them anything. And I don’t like being called a shithead for not responding to these things or looking terrified by these things. That goes double if you said shithead in the same light-hearted, patronizing way you would to a cat who just put their teeth on you for petting them too long. So don’t think that “I was just joking” would change my mind.

Oh and if you wonder why I didn’t just type this when I was with you? Because your presence rendered me unable to type from the get-go. That’s always a very bad sign for any future interactions. It doesn’t just happen around random people, it happens around people who are peculiarly invasive.

If I see you tomorrow and you have read this: DO NOT talk to me, touch me, joke with me about what happened tonight, hang around near me acting huffy, or any other direct or indirect interaction with me. I can’t take it. I couldn’t take what you did already. Enough is enough. FFS.

Also? If you hadn’t put me through all that, I wouldn’t be refusing to talk to you anymore. I would meet you tomorrow, or not, and either way things wood be fine. So don’t blame me. I’m just trying to watch out for my health. (Yes, literally. Which is why I’m not budging on this.)

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.

What Makes Institutions Bad

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[I wrote this in response to a Dave Hingsburger post. Andrea Shettle asked me to post it here. Summary of my very long response: Most people don't have the foggiest clue what's bad about institutions. What's bad is something you pretty much never hear about, which is the violence it does to people's insides at a very deep level. And that can't be stopped by just removing the things that LOOK bad and throwing a layer of glamour on top.]

Please, please, please everyone who talks about this in the past tense — STOP. This is still going on. Everywhere.

I can’t even explain what it feels like to read things like this. Because I think too many people get the wrong kind of idea.

They will think that this is over. It’s not.

They will think that the awfulness and cruelty of an institution is measured by the size, the shape, the physical beauty or lack thereof, the amount of money funneled into it.

And those things are not real.

And those things — the belief in those things — are hurting and killing people still.

People don’t understand what’s behind the worst institutions I can possibly imagine. They think I’m kidding when I say it. Understand that I’m saying this as someone with experience of institutions that people often remark (from my photographs) look just like prisons, and institutions that look absolutely lovely to anyone who doesn’t have to live in them.

The worst institutions have lots and lots and lots of staff. They have beautiful grounds that people are more or less free to walk around on. Every room is decorated in ways that suggest a regular, pleasant house — and if anything is stained or broken someone fixes it, washes it, and paints over it within a day. There are no locks on the doors.

All of the staff are gentle and would never physically abuse an inmate. They are highly trained at redirecting and calming anyone who becomes violent. If you go outside, they follow you at a discreet distance, where they think you can’t see, to give the illusion of freedom and privacy. Their every movement and tone suggests sweetness and gentleness.

But they treat everyone as if they were somewhere varying, between infancy and four years old. With everything — everything — that entails.

Because they do not use physical restraint, they have to restrain you in other ways. They do it by such skillful manipulation that if you ever find out you were being manipulated, it’s long after the fact. If you confront them on it they’ll sweetly and politely tell you they have no idea what you mean. And they will continue to somehow always get you to do what they want, or else to feel awful about not doing so.

Glamour is a word that can refer to a kind of faery magic that can make a hovel appear to humans as a splendid palace. I often use the word to mean a similar kind of deception — a beautiful facade over a terrible reality. I make it part of my life’s work to see through glamour. And I see a whole lot of glamour used in conversations about institutions.

The above institution I have just described has a layer of glamour over it as well. If you look beneath the surface, it’s utterly horrifying. Most people don’t know how to see beneath the surface. Even when you personally are in such a situation, it can be hard to see.

You feel as if there is something pressing down on you, muffling and suffocating. But when you look around, there’s no outward sign of it. So why are you not happy? You must be an awful person to feel so awful when all these nice staff people are doing so much to make you feel at home. You look around, you try to search for what is bothering you, and it’s nowhere. But you’re in agony. Whenever you think nobody’s looking, you cry, sometimes it feels like you’ll never stop. Deep down inside you, you know something is going terribly wrong. But trying to pinpoint it is like trying to get a firm grip on a cloud.

Get a glimpse under the glamour and you see that all that has happened is a bunch of substitutions. They stopped locking the doors, but they started following you everywhere and subtly guiding you where they want you. The institution itself is positioned so that even if you tried to run away you couldn’t get anywhere. They stopped restraining your body, but their manipulation is like a permanent set of shackles on your mind. Their sweetness in manner hides the fact that they are sweet to you the way they would be sweet to an infant — even when you’re pushing sixty. Treat you like that long enough and you begin to respond and structure yourself like an infant, and the damage that does inside can’t be calculated.

I literally have nightmares about that type of institution. When I’m wrapped up in the glamour, this terrible calm takes over. It feels like something soft and smooth pressing all over my skin, and the temptation is to surrender to it and feel its fake calm, fake happiness. Then I wake up and want to vomit I am so terrified and disgusted with what I’ve just experienced.

This past summer I attended a recreation program for DD people. And it was so much like a replica of my nightmare it was scary. Sometimes I would get smothered under the glamour, other times I wanted to scream. I cried more that week than I normally do in years, yet I was at every turn made to feel as if the problem was me. I can be so very passive but even my most passive wasn’t good enough for them.

One day I looked around and saw that everyone there was older. From the era of big institutions. Where they were used to being treated like this, and mostly could out-passive me any day (which is scary because I can get very passive). I talked to a woman whose roommate goes there — she said she goes in a grown woman and comes out acting like a young child. And not in a way that’s just her self-expression — this is one of those places that molds you into that form.

To survive in a place like that something inside you has to break. It’s impossible to fully explain to someone who hasn’t been in that position. Something inside you has to die. And it doesn’t die any less because you got one of the “good” (read: glamour-covered) institutions. The same forces are crushing down on you either way, the difference is cosmetic.

The worst part of institutions is not physical violence, obvious forms of abuse or neglect. It’s not even the experiences you don’t get to have. It’s the damage that is done right down to your soul, by living under the power of other human beings. Glamour makes no difference. Prettiness makes no difference. Size makes no difference. Even length of time makes less difference past a certain point than you’d think.

Until you understand that damage — what it is, what it means, where it comes from — you will never get rid of institutions. You have to understand it on a very intimate level or you will reproduce it without knowing what you’re doing.

I still can’t tell you how long I was institutionalized. I can tell you roughly the amount of time I lived in mental institutions and other residential facilities. But that’s not the same as the amount of time I was in institutions. I call what I got when I got out, “community institutionalization”. That’s where you live with your parents but you spend most of the day being driven between various places — segregated schools, segregated day programs, segregated rec programs, each one with institutional power structures behind it. I remember mental institutions where they walked us to different parts of the grounds for different parts of the day. There’s not so much difference between that and being driven.

The transition between a locked ward on a mental institution and later periods of my life was so absolutely gradual that by the time I was “free”, I never noticed. That’s how they wanted it. I simply created the institutional walls around me wherever I went. That’s why I put “free” in quotes. If I had been someone else, I would have been free. Because I was me — because of my particular history — I was not. There were invisible walls all around me and I certainly never noticed the real ones were not there. Which was exactly the purpose behind what was done to me. They didn’t think I could function outside an institution so they carefully built one inside my head, making me truly unable to function anywhere.

I can get over the physical violence. The attempts on my life. The neglect. The sexual abuse. The parts of “normal life” that I missed and still am missing. So long as I physically survive (which even the recent rec program almost avoided) I will and can get over these things.

I am not sure to what extent I will ever get back the parts of me that died in order for the rest of me to survive. Every now and then I notice I’ve gotten a little bit back, and I think that finally everything will be okay. And then a little time passes and I realize how much is still gone.

I’m not even saying I can’t be reasonably happy. But there are parts of me I still have no idea if I will ever get back. Those parts weren’t destroyed by ugly bare rooms, horrific physical or sexual abuse, the loss of normal experiences, or any of the rest of the things most people think when they think of bad institutions. Those things happened to me and they are bad. But on a real basic level they are not the cause of the problem.

The cause of the problem is a certain exercise of power. Of person over unperson. And in order to survive it the inmates have to become as much of that unperson as they can manage. And that does violent damage deep inside the self, that can be incredibly hard to repair. It’s violent even when it comes with purported love and sweetness and light.

And until people can stop forcing us to damage ourselves in this way, institutions will continue. That, not anything else, is the core of what is wrong with them. But it’s much harder to put that into songs or images or even just words, that the average person would comprehend.

What a total non-apology.

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I’m not generally one to throw a blog post out there every time someone uses a disability slur. But the way this was handled is just pissing me off on multiple levels.

So a politician named Rahm Emanuel decided to insult a bunch of political activists by calling them “fucking retarded” when they didn’t agree with him on something.

Then when he realized this was going to get out, he called Tim Shriver (CEO of the Special Olympics) to apologize. This apology was apparently accepted. Newspapers are calling this an apology to the disability community.

Here’s where my brain’s starting to stall on me coming up with the language for it.

He didn’t apologize to the people the insult was aimed at.

Argh brain splitting up into pieces.

He apologized to Tim Shriver only because Tim Shriver has power and political clout and could have made his life difficult. Not for any other reason.

The slurs “retard” and “retarded” are used mostly on people with (all sorts of) developmental disabilities. If he were going to apologize to the people the terms are actually used on, he would have apologized to one or more of us, or all of us collectively.

Worse, Tim Shriver has no authority whatsoever to accept apologies on behalf of even one of us, let alone the whole of us collectively. He doesn’t even have a developmental disability, he just runs one of those primarily “of the nondisabled, for the disabled” sorts of organizations. While nobody can speak for all of us, if he’d really wanted to apologize to us, he could have started with apologizing to the heads of self-advocacy organizations. Even they couldn’t accept apologies on behalf of entire communities, but they’re closer to it than Tim Shriver is. (And why is it that when people think of DD people their minds always jump to Special Olympics?) And yet the newspapers seem to be totally buying it without even questioning. HELLO EVERYONE, WE’RE OUT HERE! REALLY!

This is just multiple layers of wrongness all piled up on top of each other. If I’ve missed one of the layers, it’s because this is really stretching my brain to write this and it hurts. Suffice to say, there haven’t been any genuine apologies going on here, to anybody. But if it’s wrong to use a slur and you genuinely want to apologize, then you have to apologize to the people the slur refers to (and directly to us, not to the most powerful person you can think of who “works with” us but isn’t one of us), as well as the people you used it on. No matter what you think of either group, if it’s wrong to use a slur then you can’t just throw a half-assed apology vaguely in the direction of someone sort-of-connected (but not actually a member) to one of the groups in question and just leave it at that.