The hospitalization started awful but got better after the Internet convinced the hospital that lots of people care what happens to me. Since not everyone has that resource, my goal once I get better is to work hard on a non discrimination policy that will prevent any other patient from going through what I went through.

I don't have the energy to go through the whole story again. But basically my gastroparesis was getting so severe that I could no longer keep up a minimal Iiquid diet and was also aspirating frequently as the gastroparesis got more severe (due to gas bubbles from food sitting forever in my stomach), leading to getting pneumonia so often that it was clear my life was in danger. And I was dropping weight in ways that nobody should ever drop weight, fat or thin. So I needed a feeding tube, the ER docs suggested a feeding tube before I even said I needed one, everyone actually on my case knew I needed a feeding tube… and I spent a weekend being pressured, by strangers who were not specialists in any of my conditions, subtly and not so subtly to accept death instead of a feeding tube.

The above picture shows I got the feeding tube, and am using it just fine for food and medication. Not without a whole lot of unnecessary pain and difficulty. Fortunately I have outside witnesses to nearly every single thing that occurred in this place. I can't go into it all because it's too fresh in my memory but someday I'll write more. I just wanted to let people know I'm still here, no thanks to some assholes I met along the way. But there have also been a lot of really great people, especially nurses, working here. And the longer I've been here the less crap I've gotten from people. Especially as they see the feeding tube working wonders in all sorts of ways.

(For anyone curious this is a GJ (gastrojejunostomy) tube, with entries into my jejunum and stomach. It allows me to completely bypass my stomach for nutrition and medications, and to drain gas and fluid from my stomach to help prevent aspiration. I'm already gaining back the weight I lost, I'm far less nauseated than I've been in years, and eating is incredibly easy. There may be complications along the way, but I haven't experienced one yet. And since the complication of the way I was living was eventually going to be death, I'm quite willing to take the risks involved.)

The gastroparesis diagnosis was more than confirmed a month or two ago when they made me eat radioactive eggs and traced their movement through my stomach. And the repeated aspiration pneumonias were resulting in some gnarly cat scans. It got so I was on antibiotics more often than not and getting sicker and sicker and something had to stop. I don't know if I'll stop aspirating entirely at night, though I sure hope so. But it was happening more than once a week for the past few months and it hasn't happened at all since the feeding tube was placed. But it was a fight the whole way to get the right treatment that even all the doctors who really knew my case insisted I needed, to get the tube inserted in a way that wasn't horrendous, to get adequate pain care after the massive fail with the local anesthesia, and to be allowed a few days to learn bed mobility and eventually transfer skills after the surgery (they seemed to believe that if I didn't learn instantly I'd become lazy and never learn, and refused to acknowledge any of the slow and steady progress I was making just because it didn't happen all at once).

That's more than I intended to write. I'm tired. I should be home in a few days, at which point the trick will be getting all the support staff trained in tube care. But they're already starting the trainings. So hopefully going home won't be too awful. I desperately want to see Fey again. I've been seeing way too much of the inside of this hospital and not enough of anything else ever since August when my first big aspiration pneumonia + gastroparesis clusterfuck hit. It turns out the gastroparesis is the answer to the “chronic nausea” I'd had, as well as the fact that I felt better if I could fast for extended periods periodically, so this has been going on a long times they just didn't pick up on it until I stopped eating solid food (and then only after they saw me not eating, because they didn't believe me as a fat person that I wasn't eating, even when I dropped 40 pounds too fast for it to be anything else).

Anyway I'm rambling. I want to get out of here but I have to stay the weekend. I don't want anyone else to ever be pressured towards death in the way I was (sometimes quite openly) yet I'm sure it happens all the time and I have to find a way to stop it. I never envisioned myself in quite this situation for some reason, even though I've been in similar ones. Feeding tubes seemed like things that happen to other people. Not that I mind it. I completely love the tube. I just never realized my “little nausea problem” would rapidly turn into a severe condition that demanded this kind of measures.

I want to go back to advocacy especially after the things I've seen happen to me and others in this hospital, I just have been too sick to handle it, and the lingering cognitive problems from delirium last fall haven’t helped. But if I can do anything about anything I will help the disability communities locally handle this situation because its horrendous.

Posted with Blogsy

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.

Posted with Blogsy

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.”

Posted with Blogsy

This is one of two posts I’m making for Blogging Against Disablism Day. Both are about caregiver abuse. This one is about misusing power in caregiving relationships. In particular, abuse that most people wouldn’t think of as abuse.

A note on vocabulary. Caregivers are called different things in different contexts. Caregivers, aides, personal assistants, attendants, staff, etc. Sometimes they also have more specific titles like LNA for Licensed Nursing Assistant. Regardless of how any of these terms are used outside of the disability world, every single one of them, in the context of disability, refers to someone with incredible amounts of power over disabled people. Not a person the disabled person has incredible power over. And that goes for even if we hire and fire them ourselves.

I get services from two agencies, a developmental disability agency and a physical disability agency. The DD agency calls caregivers staff. People from the physical disability agency can have all kinds of job titles depending on what their specific job is. The ones I see regularly are called LNAs. None of these terms are considered disrespectful by the agencies using them, or by the caregivers themselves. And when I refer to staff or LNAs, I am talking about people with huge power over me, not people subject to my own power. That will become obvious when I use events in my life to illustrate different abuses of that power.

I recently found this graphic developed by the Wisconsin Coalition Against Domestic Violence and distributed by the National Center on Domestic and Sexual Violence. It’s called a Power and Control Wheel.

At the top, it’s labeled “POWER AND CONTROL WHEEL: PEOPLE WITH DISABILITIES AND THEIR CAREGIVERS”. Around the outer edge, colored black, are listed physical and sexual violence. The middle says “POWER & CONTROL”. In between, in grey, are various forms of abuses of power and control.

Since this is a graphic, and since the PDF file is kind of muddled in terms of the placement of lines that a screen reader might use, I’m going to transcribe what’s on the graphic and then provide examples from my life and the lives of people I know. But first, the graphic and the PDF:

A PDF of this file is available from the National Center on Domestic and Sexual Violence here. So on to descriptions of each section of the wheel.

COERCION AND THREATS:

Threatening to hurt the person; withhold basic support and rights; terminate relationship and leave the person unattended; report noncompliance with the program; use more intrusive equipment. Using consequences and punishments to gain compliant behavior. Pressuring
the person to engage in fraud or other crimes.

Threatening to cut off support is a huge one I see all the time. I’ve had people literally walk out the door in the middle of a shift without assisting me with vital things, just because they were angry with me. Or just because of things I can’t even figure out. Like more than once a person has come up behind me and startled me, and I jumped and shrieked involuntarily, and they said “That’s it, I’m out of here” and turned around and walked out the door. That’s basically denying a person disability services on the basis of the person being disabled, but it happens all the time.

Using consequences and punishment to gain compliant behavior is something that pretty much all institutions do, including the kinds of institutions that most people don’t call institutions. My special ed school was huge on that. And the consequences were things like being locked in a dark closet for hours.

I found it amazing that they listed the part about pressuring people to commit fraud. Years ago, I had a staff person who was very manipulative in general. He would do things wrong on purpose and then blame them on other staff, in an attempt to get me to trust him alone and to distrust other staff. I’d experienced that before, so I knew what I was looking at. He also claimed to have been fired from this job in the past because he was “just too political” about disability rights.

But the very last straw was one morning when he came in and explained that he had “connections” at the local hospital. He knew that I was having trouble obtaining a certain medication that Medicaid refused to cover. He claimed that if I was “already in the system”, Medicaid would have covered the medication because they only refused to cover it for people who weren’t taking it already. He told me that he could use his “connections” in the hospital to change my records in the computers so that it looked as if I’d already been taking it, and that then Medicaid would cover it.

The moment he was gone, I contacted my case manager and told him that I was afraid of this guy, and that he’d tried to get me to commit Medicaid fraud. The very last time I saw the guy, he must have seen the writing on the wall. Because he told me he was on the verge of being fired again for “being too political” so he was going to quit before they could fire him.

But one mistake they made was ever allowing him back into my apartment after I’d reported what happened. Caregivers can turn outright violent if they think you’ve reported them for abuse or incompetence. Not all of them do, but given their extreme power over disabled people, it’s dangerous to allow them to be alone with a client once they know they’ve been reported for abuse or that their job may be ending. I’ll get to an example of that later.

The times when people threaten to use more intrusive equipment have usually been when I’m dealing with the medical profession. I once refused to take a pill I was allergic to, and without even stopping to figure out why, a doctor threatened to stick a suppository up my ass. She wouldn’t let up on that and other threats until my power of attorney contacted Patient Relations on my behalf. In the psychiatric system, refusing medication often means being tied down and injected with it. There’s something very punitive about the way these systems handle someone not immediately going along with whatever they want.

I’ve also had people, both medical and otherwise, do things to me in ways that hurt. On purpose. That didn’t have to hurt. I once had a doctor order a blood gas not because I needed one but because he’d decided I was a bad patient. He pretty much said outright that this was why. My problem? Saying that his treatment for asthma wasn’t helping my breathing problem that wasn’t asthma. Because of him, they overlooked an infection that did permanent damage to my lungs. Other times it’s just a matter of providing the same services as usual, only in a violent way. It’s hard to describe the difference. It’s like there are gentle ways and there are violent ways to help someone transfer into a wheelchair.

There’s also the threat of being considered a bad client. The kind who complains too much. The kind who bans too many people from your house. I’ve put up with all kinds of things for the sake of not being considered that kind of client.

That includes sexual abuse. That’s another kind of abuse where sometimes it’s all about the way the person does things. In this case I needed to be bathed in bed and have different lotions appled to various parts of my body. And this woman… I can’t describe the way she did it. It was like a sexual caress. It was all wrong. And yet I put up with it every day because I knew that nobody would believe me, because the abuse was too subtle, because my sexual orientation would be called into it, because I would be told I was misreading social cues, all kinds of reasons. But mostly because I couldn’t afford not to get those services.

One of the worst threats to withhold care was explicit and came from a really bad case manager. Even though prior to coming to this DD agency, I had had one staff person for several years — an eternity in human services — he started spreading rumors that I was always refusing staff before I got there, and switching them all the time.

There were two people that I began refusing to allow into my apartment. One of them had a severe cognitive impairment that prevented him from understanding three-word sentences some of the time, in ways that directly endangered me. I reported this to the agency and he thought I was saying that as an insult. I told them I wasn’t. They told me nobody with a severe cognitive impairment would be allowed to work for them. Years later they figured out he had been hiding his Alzheimer’s from the company in order to avoid getting fired. I never got an apology.

But in the meantime, they didn’t know this. And there was this other guy who was constantly proselytizing to me. Two people out of dozens of potential staff.

Well they started telling me things like “Nobody really wants to work with you, you know.” When staff told me they liked me, this case manager would tell me they didn’t really, and that everyone hated working with me. He kept sending in the two guys I’d said could not come in, and telling me that if I refused them, I would not get services at all. And that he would write me down as unilaterally refusing all services from the agency.

Later he threatened to put me in this agency’s version of institutional care if I didn’t do what he wanted. I filed a complaint about all of this and more, and I won.

Back in California, there was an agency that had a policy of firing staff that clients liked, or pressuring them into quitting. Usually through blackmail, and setting them up to look like they were abusing people. Meanwhile, if any of us reported real abuse, they’d give that person a promotion. It was twisted but very deliberate on the part of two case managers who had the most power and who treated it like a fun game to mess with our lives. I’m not kidding.

One time, even, I reported one staff person for abuse. Later on, a very good staff person, well-liked by the entire company. Was fired for abusing clients. In the same, specific, way, that I’d reported the other person as doing. There was a client who couldn’t write for himself. So he’d dictate an email and they could write whatever they wanted. And so one day they wrote an email, as if from him, accusing the good staff person of abusing him in the same bad way as the person I’d reported. He had no clue what was going on when they fired her.

But anyway. Because of my role in reporting actual abuse. They refused to give me services at all. They blackmailed one good staff person into quitting a day before she was going to be fired. She refused to tell me what they’d done to her, but she was shaking the entire shift. They did this on purpose, because the next day was the day she would train the new staff person about what I needed them to do. This left me with a new, but good, staff person, who had to learn everything from scratch. This amused the case manager.

But then the new, good, staff person, was fired in the scenario I described above. And they just refused to give me services at all for months. This person ended up doing services for me all that time without much if any pay (she got a little from a different state agency) because she couldn’t stand what they were doing to me.

The way they did it, was they’d take careful note of things I couldn’t have in staff — for instance people who couldn’t lift wheelchairs — and then they’d say “We could only find a person who couldn’t actually do anything for you, so you’ll have to accept that or nothing.” It was really weird. At one point they deliberately triggered me into a meltdown, and then smiled at a (good) staff person and said “See what you made her do?” Then blamed her. It was a mess. But it basically all amounted to withholding services because I reported abuse.

CAREGIVER PRIVILEGE:

Treating person as a child, servant. Making unilateral decisions. Defining narrow, limiting roles and responsibilities. Providing care in a way that accentuates the person’s dependence and vulnerability. Giving an opinion as if it were the person’s opinion. Denying the right to privacy. Ignoring, discouraging, or prohibiting the exercise of full capabilities. Raising a hand or using looks, actions, or gestures to create fear. Destroying property and abusing pets. Mistreating service animals. Displaying weapons.

The very first time I saw anyone from the DD agency I get services from, I knew they were going to be trouble. I was in the parking lot before they were going to interview me for services. And what I saw made me nauseated.

A disabled man got out of a car. He banged his leg a little bit. The staff person swooped over to him and said, in exactly the baby-talk voice it sounds like, “Awwwww I kiss your boo-boo all better!”

I knew at that point that if they actually gave a shit about not treating people like children, she wouldn’t be working there, because she was doing it in public in a flagrant way that meant she’d had to have done it in front of people before.

And as an agency, they really don’t give a shit. There’s individual people who give a shit, but a lot who don’t.

The agency that really has problems with privacy, is the physical disability agency who helps me bathe. Yes, they normally see me naked. Yes, they normally clean my private parts in ways I can’t clean them myself. But that does not mean they should be allowed to deny me privacy in other situations. In fact, it means they should be giving me more privacy in other situations.

The big thing is walking in on me in the bathroom. I’ve never had much of a sense of body modesty. But when I learned that puts me at risk of abuse, I’ve been trying to learn it. This is not helped when people walk in and stare at me when I’m taking a shit. There is no excuse for that except in circumstances that don’t apply here. And yet if I complain to the agency about it, they’re puzzled as to why it’s even a problem. If I want to keep them out I pretty much have to lock the door, and then they’ll stand out there loudly complaining about how much time I’m taking.

The rec program from last summer was huge about treating people like children, making unilateral decisions, and all of that kind of stuff. We had to ask permission to do much of anything at all, and… I don’t even have the mental energy to go into everything that happened there. I already described it in another post.

Even otherwise good staff frequently make decisions about stuff without consulting me. Sometimes I agree with them, sometimes I don’t, but people should at least ask.

And providing their opinions as if they were my own? That’s happened to me all the time. It’s made worse by the fact that people will talk to a staff person rather than to me. Then the staff person can answer on my behalf without even asking me what I believe.

ECONOMIC ABUSE:

Using person’s property and money for staff’s benefit. Stealing. Using property and/or money as a reward pr punishment in a behavior program. Making financial decisions based on agency or family needs. Limiting access to financial information and resources resulting in unnecessary impoverishment.

What usually happens with me is more subtle. Which is that people will spend money in ways that really screw up my finances, but nobody holds them accountable.

I have a friend who is very poor. She asked someone to send something by mail or Fed Ex or something, with whatever the normal fare was. They bought the most expensive option, like next day air or something, and brought the expense up to $100. She then didn’t have any money to spend the rest of the month. The person was never held accountable, and my friend didn’t have the cognitive or physical stamina, or money, to fight them in court or something.

I can’t count the number of times I’ve had people do similar things to me. Or they’ll spend over $100 on groceries without telling me. Which is why I now have a ledger system in place where people have to write down how much they spend. But it doesn’t stop people from spending it in the first place.

For someone without very much money, this is a huge deal. And yet there’s very little recourse, either when people spend too much, or when they destroy expensive property.

As far as using my property for their own purposes? I had this staff person years ago, who was always evangelizing to me about his religion. And was always trying to hold me to standards from his religion, when it wasn’t my religion to begin with. But then he began telling me things like “I provide these services for you, so you need to do things for me in return.” What I had to do in return, apparently, was use my printer to print off copies of a pamphlet regarding his religion.

I also at one point had been prescribed Vicodin after surgery. I didn’t use all of it. So a staff person started taking it. As in, taking it and using it. I couldn’t complain because I couldn’t afford to have her not working for me.

WITHHOLD, MISUSE, OR DELAY NEEDED SUPPORTS:

Using medication to sedate the person for agency convenience. Ignoring equipment safety requirements. Breaking or not fixing adaptive equipment. Refusing to use or destroying communication devices. Withdrawing care or equipment to immobilize the person. Using equipment to torture person.

I once lived at a residential facility that made a big deal about the fact that they didn’t use restraints or locks on the doors. What they didn’t tell people was that they used medication and behavior modification to ensure that there were restraints inside people’s heads. The same happens in a lot of systems that claim to be “more humane” than places that use locks and restraints. I’d far rather just be tied down, at least it’s honest.

I remember one staff person who had been great for years, and then something changed. Suddenly she began withdrawing support at random times, that seemed designed to hurt me and make me miserable. She made me sleep on the floor rather than on the only bed in the apartment. She would not allow me to lie down on that bed even when I’d just had a long airplane trip and desperately needed a place to lie down.

When I moved house, she refused to allow me any role in unpacking or deciding where my belongings went. And that was when I first experienced the part where she began messing with my head. She said, in a tone as if I had requested something ludicrous and impossible, “I am not going to sit here and ask you where to put every single thing!” I began to doubt myself so much that I spent years afterwards asking other staff people, “Is it wrong to ask for that when I’m unpacking from a move?” They all say no it’s not wrong, but I’m still afraid to even write this down lest someone tell me how I’m horrible to staff by expecting them to do things they shouldn’t be expected to do.

Then it started being things where I badly needed something. She had set things in front of the door so that only a walking person could get in and out, but you couldn’t get out in a wheelchair. When I asked her to move these things, way too heavy for me to move, she told me “I’m not your slave.” She convinced me that if I contacted my case manager about her not doing her job anymore, the case manager would see how ridiculous I was being to expect her to do things that she’d done for me for years without complaint.

She later told me that when someone is stopping any kind of relationship with her, she treats them like shit to punish them and to convince herself that it’s not going to be any loss to her. But that’s a really shitty excuse for what she did.

I don’t know who did it, but someone eventually reported her to Adult Protective Services. I don’t know what abuse they witnessed, but it was bad enough that a total stranger reported her. She blamed me and a friend, but we didn’t do it. She wouldn’t believe me when I told her we didn’t. I eventually did tell my case manager what was going on, and she was horrified and said I was not in the wrong.

And yet still. I’m afraid to talk about this. Because on some level I still believe that I’m an unreasonable person who asks staff to do things that they shouldn’t be required to do. Even though since then I’ve asked tons of people and they all said she was in the wrong.

Elsewhere I describe what happens when people outright ignore that I’m typing anything. But another thing happens sometimes. Where they’ll just say to me, “I don’t have time for this” whenever I try to say something. Or they’ll talk over me too loudly for them to hear me, since communication devices don’t usually go up to very loud volumes. There’s this idea that communication ought to be a privilege, not a right, and that I’m only allowed to communicate at times when it’s convenient to others. Or that I don’t get to communicate at all if they’re angry at me for some reason. This becomes even more of an issue at times that I need physical help using a communication device. People seem to think of communication in general as something that’s nice if there’s time but otherwise forget it. It’s all about whether it’s convenient to them, even though times when it’s inconvenient to them are often the times I most desperately need to say things.

MINIMIZE, JUSTIFY, AND BLAME:

Denying or making light of abuse. Denying the physical and emotional pain of people with disabilities. Justifying rules that limit autonomy, dignity, and relationships for program’s operational efficiency. Excusing abuse as behavior management or as due to caregiver stress. Blaming the disability for abuse. Saying the person is not a “good reporter” of abuse.

Caregiver stress is the one that stands out to me here. People have used it to justify literally everything up to serial killing of disabled people. (No, I’m not exaggerating. I wish I was.) And the public buys it. They buy that it is just so stressful to work with disabled people, that abuse is bound to happen. They even say this about murder, even multiple murders, even when the murderers outright admit they only did it for fun.

I’ve done a lot of research into the murders of disabled people, and autistic people in particular. You hear things all the time like “She shouldn’t be sentenced to prison. She already served 15 years of being the parent of an autistic child.” Again, I wish I was kidding.

And if people will use this to justify murders and serial killings, they will use it to justify any abusive thing that happens to a disabled person ever. And they do. All the time. This is one of many reasons that I don’t trust most campaigns for awareness of caregiver stress and burnout. I’m not denying that those things are real. But they’ve become so ingrained in public consciousness, that the instant a crime against a disabled person makes the news, all you hear is “It’s so hard to take care of That Kind Of Person, you really can’t blame them.” Coupled with a lack of focusing ever on the fact that disabled people get burned out from having to put up with caregivers all the time whether we feel like it or not, the usual ways people discuss these things start seeming one-sided and scary.

How bad is it? I know several people who have contacted rape crisis hotlines to report rape by caregivers, and been told outright “You have to understand the kind of stress they’re under, it’s very hard to care for someone like you. They really have your best interests at heart and you should learn to accept that.”

I have told people about things I went through growing up that nobody should have to go through ever. And been told that “being a caregiver is hard, you have to understand that”. As the very first response when I try to disclose horrific forms of abuse. There is no escaping this excuse. And it’s a terrible excuse but people buy it because the disabled person’s side of the caregiver relationship is not taken seriously at all. Even though we’re truly the ones on the wrong end of that power relationship.

Mind you, I know caregiver burnout happens. But any discussion of caregiver burnout has to draw lines about what it’s used to justify. I’ll buy that people will get irritable and snippy. I won’t buy that truly abusing and killing people is ever an acceptable response. Any discussion of caregiver burnout also has to acknowledge the other end, the end nobody talks about. Which is that disabled people get burned out on our caregivers. But that we have no choice but to accept care every day. We can’t take a break without danger to ourselves.

Some places have respite services for caregivers. There are no respite services for disabled people. Ultimately, even if it would make them feel terribly guilty, caregivers can walk away and abandon us without dying. Disabled people cannot abandon our caregivers without dying. That shows one huge power discrepancy in the relationship.

As for all the other things, they are pretty much standard practice in most agencies and institutions. Everything is set up for the convenience of staff and other workers, not for the convenience of disabled people. It’s rare to find a place where this is otherwise. And that means that if abuse happens, it will either be justified as part of the program, or someone will make up ways to make disabled people sound like we’re unreliable reporters.

There was a woman who was a client of the same agency I am a client of. And her caregiver literally would not allow her into certain areas of the house. She insisted that her client could not be home during certain hours. One day, she had a serious bathroom accident at work. Her caregiver refused to allow her to come home. This was reported to Adult Protective Services by her job coach.

The entire investigation basically involved the agencies finding “evidence” that this client was a habitual liar. APS decided that abuse didn’t happen and that the client was lying about it. You hear the same things when it’s sexual abuse. Dave Hingsburger said he went to a rape trial where the agency brought out all the different reasons this person could not be trusted. She tried to say “But I only lie about little things, not about something like this.” As I remember it, nobody believed her. But even when someone isn’t a liar, you can bet that once they report abuse by a staff person the agency happens to like, they will be made into one.

ISOLATION:

Controlling access to friends, family, and neighbors. Controlling access to
phone, TV, news. Limiting employment possibilities because of caregiver schedule. Discouraging contact with the case manager or advocate.

Limiting employment possibilities because of caregiver schedule is the norm for one agency I get services from. They’re the people who provide personal care, which includes things that I absolutely can’t go without.

I don’t have a job and will probably never have a job. But there are two hours a week I ask them not to come, and one day a week where I ask them to come before noon. That’s it. Two are essential meetings with my case manager. One is a day when, if I’m feeling up to it (which is practically never these days), I go to an art program.

I have been told, explicitly, and continually, that even just those two hours a week alone. Without the day when people can’t come past noon. That just those two hours are limiting them too much. That it’s not fair to the LNAs or their scheduler. That essentially if I am not available 24/7, then I have no reason to expect proper care.

They’re the only game in town for the kinds of services they provide, and they know it. So they are able, as an entire agency, to regulate disabled people’s lives so much that if we have jobs, or even a couple meetings a week, we can’t expect care.

As far as isolation goes, the recreational program I was in last summer did that in spades. I was not allowed to use the phone except when they wanted it. When I was extremely ill, like on the verge of needing to be hospitalized, I was not allowed to call my power of attorney for healthcare. And when I tell advocates that we were not allowed to use the phone whenever we wanted, that is enough to send off huge alarm bells. They also only allowed contact with my case manager if they were the ones doing the talking and I was merely in the room. If they didn’t approve of something I wanted to say to my case manager, they refused to tell her what I was typing.

I’ve also experienced a really peculiar form of isolation that isn’t listed here. It’s happened to me several times in several forms with abusive caregivers.

It’s where they try to prevent contact with people, but they don’t do it overtly. They just start dropping tiny little hints here and there, that friends and other staff are not trustworthy people. That they, in fact, are the only trustworthy person in your life. That other people are saying bad things about you behind your back. That nobody else actually likes or respects you. This can be done so subtly that you barely even notice until you realize months later that this is the only person you’re talking to anymore, and they’re being horrible to you.

Related is something I never see discussed anywhere either. Where someone who is incompetent or abusive in almost all other areas, will have one thing they do to make themselves indispensible. It may be working longer hours than they’re technically supposed to, at a time when you’re not getting enough staff hours to meet your needs. It may be cooking you the best food at the cheapest prices that you can possibly imagine. It really accomplishes two things. First, you won’t want to fire them because you’ll lose the above-and-beyond support they’re giving you.

But the other thing is more directly related to isolation. They do all these extra things for you, but they also start doing things to make other staff look bad. It can be deliberately screwing things up for you and then claiming another staff person did it. It can be simply lying outright about someone else’s ability to help you. It can be implying that nobody else would ever do these extra things for you. The result is to elevate themselves while putting all other staff down, and making it so you don’t want to communicate with other staff because you don’t trust them as much as you trust this person.

EMOTIONAL ABUSE:

Punishing or ridiculing. Refusing to speak and ignoring requests. Ridiculing the person’s culture, traditions, religion, and personal tastes. Enforcing a negative reinforcement program or any behavior program the person doesn’t consent to.

I would add to this one something that specifically happens to people who can’t speak and use other means of communication. I have communication devices that speak, but a lot of time I have used ones that don’t speak to save time and energy. This means that someone had to read the screen. Sometimes when staff have been angry at me, they simply refuse to read the screen. That’s a level above and beyond the ordinary silent treatment because it makes it impossible to say a word to them even when it’s important.

INTIMIDATION:

Raising a hand or using looks, actions, or gestures to create fear. Destroying property and abusing pets. Mistreating service animals. Displaying weapons.

The last time I had a staff person raise a hand to me, it wasn’t even my staff person. This is the story I promised earlier about what can happen once you start challenging a caregiver’s power, or once they know they’ve been fired.

In this case, the person was a friend’s staff person. She was really good, except for one thing. She could not stay out of my friend’s stuff. If you asked her not to, she’d either pretend not to hear you, or laugh like you just made a huge joke and do it anyway. In fact, even if she wasn’t already doing it, the moment you asked her not to do something, she’d immediately do it. And it was getting to be a huge problem, because she was arranging my friend’s stuff in ways that made it inaccessible from a wheelchair and impossible for my friend to get any work done.

Every time my friend got out important paperwork, for instance, this staff person would “put it away” without asking, even to the point of putting it at the bottom of a box stacked behind and under boxes that my friend was unable to lift. My friend asked me to come along to help her advocate for herself when she finally drew the line for this person. She wanted to simply not allow this person into her living room.

At first, she laughed and tried to go in anyway. When we made it clear we really meant business, though, she began screaming at us. And I really mean shouting at the top of her lungs. She said that she was going to leave and refuse to cook dinner for my friend, who is unable to cook for herself.

I told her that was a form of caregiver abuse and not acceptable. She kept screaming about how she was “NOT THAT KIND OF PERSON” and that I needed to leave, now, and that she was not going to listen to a single word I said. In practice this meant shouting over the top of my communication device, which can only go to a certain volume. I of course didn’t leave, because leaving my friend alone with a staff person who was that angry would have been a serious danger to my friend.

But neither of us were prepared for what happened next. She actually raised her hand to me and took a swing, stopping short only when her hand was two inches from my face. Then she held it there shaking. After we got her to leave, she hung out outside my friend’s apartment for several hours. She claimed that she was out there doing work for another client, but she didn’t have another client during those hours.

Yes, all of this was reported. No, nothing happened to this staff person. That’s what happens in the system, especially in the kind of agency (most of them) that protect staff and not clients. Even in things like murder investigations this is usually true.

She also seriously distorted what we actually told her, when recounting it to other people in the agency. The things that made her the angriest were when we told her that withholding food is considered a form of caregiver abuse, and that the things she was doing with my friend’s stuff involved a power relationship that she wasn’t acknowledging. We carefully explained why it is that people who have this kind of power, often don’t realize it. We went out of our way to explain why she might not have noticed this and that we knew it wasn’t her fault. When she repeated it to others, it was “They told me that I was an evil, power-hungry person who abuses disabled people for fun.”

This is also an excellent example of why a staff person should never be left alone with someone who has reported abuse, has let them know they won’t be working there any longer, or that kind of thing. This woman gave no warning at all that she was going to turn loud and violent at a mere request to stay out of a specific room. I tell staff to stay out of a particular room sometimes for all kinds of reasons, and have never gotten a response that intense.

So basically…

There are tons of different ways to abuse power, and this only covers some of them. But this is the best description I’ve ever seen of stuff that nobody ever even acknowledges as a problem. Hitting people and sexually assaulting them are not the only kinds of abuse out there, and in some circumstances they’re not even the worst.

Also understand — I’m not saying that all caregivers are abusive, or even that all caregivers who do a few of these things sometimes are “bad staff” overall. But it’s hard to have power and not abuse it. And people need to be aware that caregivers have this unacknowledged power. And that lots of them abuse it. And that very few people care. Getting services is not a walk in the park. You will inevitably encounter people doing all these things and more. And you have to be prepared.

Contrary to what most people believe, caregivers are not selfless, self-sacrificing saints who never do us any harm, yet shoulder a great burden that leads to burnout, which excuses anything they might do wrong. That’s not even true of the best ones. Caregivers are human beings. Human beings do a lot of bad things to each other. Especially people they have power over. Caregivers have that power. And it is not wrong to talk about it, to point it out, and to say that what some of them do is very wrong and destructive, and not excused by burnout or stress.

And I’m not talking without experience here. I’ve provided care for other people. And despite the inevitable stresses, you have to find ways of handling them other than punishing the person you’re supposed to be assisting. You also have to be constantly aware of your own power.

I’ve also had caregivers who, while very good in some areas, did some of these things. And I’ve had to make decisions about that tradeoff. Should I find someone who does things worse overall, but who does fewer of these things? Or should I stay with this person and try to work out ways to manage the things they are doing wrong? That’s a decision a person can only make for themselves, and doing some of these things doesn’t automatically make someone the worst choice in caregivers. It all depends on the circumstances and the people. But it’s good to know these things are wrong, even when you can’t seem to avoid them.

Not everyone even knows these things are wrong to do. So I have a printout of this chart posted in my kitchen, and have given one to my case manager for training purposes.

And here are the contact information for the two places that came up with and publish this stuff:

Developed by: Wisconsin Coalition Against Domestic Violence. 307 S. Peterson St., Suite 2, Madison, WI 53703. 608-235-0539. Based on the model by the Domestic Violence Intervention Project, Duluth, MN. National Center on Domestic and Sexual Violence. 7800 Shoal Creek, Ste 120-N, Austin, Texas 78757. tel: 512-407-9020. fax: 512-407-9022. www.ncdsv.org.

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.