BADD: Caregiver abuse takes many forms

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Blogging Against Disablism Day, May 1st 2012

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:

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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.

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33 responses »

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  2. This is quite terrifying. Thank you for shedding some light on this issue. It’s hard for me to imagine abusing the kind of power that a caregiver has (just purely situationally), so it’s very helpful for me to learn about this. I guess I’ve fallen into the trap of forgetting that caregivers are human and not perfect. Very, very scary. I might have to write a story about this.

  3. It’s disheartening to read about all the abuse that you personally have encountered, but I’m so glad that you talked about it here, because you’re right: I would say that 80% of the time these have been done to me, the person who was doing it did not even recognize that it was a problem, let alone abusive. (And that chart is amazing ~ thanks for the link)

  4. Thank you so much for this post, Amanda.

    It seems bizarre to me that (in the UK at least), such tremendous care is taken to avoid placing vulnerable children in the care of potential abusers. Doesn’t always work, of course, but they do try very hard. Yet there seems this assumption that if someone chooses to work with vulnerable adults, they simply must be a good egg and any reported problem must be a simply misunderstanding or a false allegation.

    I really hope that your future caregivers are of better stock.

  5. The saddest thing is that reading this makes me feel like “this is so horrible it can’t be really happening, right?”. Yet what you write completely echoes things I’ve read written by other bloggers.

    Yet I have always known that the best way to not get caught doing bad stuff is doing something so awful no one will believe it. Both school bullies and many adults in manager positions know this. :-/ Apparently some carers too. I don’t want to believe any of what I read here, it would be easier to think such abuse doesn’t really exist, yet it does.

    I’m tired, I don’t know if I managed to say anything of value with that rambling. But it’s a superb post and I’ll definitely be linking here.

  6. Thank you for writing about these things. Your experiences and clearly those of others are really horrifying and I’m sorry (if not surprised) that you have been ignored and belittled so often.

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  8. This is so unbelievably horrific. Some of my thoughts while I was reading:

    “OMG, I am so lucky this stuff hasn’t happened to me. I am going to thank my PCA right now for being awesome. I am not grateful enough.”

    “Wait a minute. That’s fucked up. Nobody should have to be grateful for not being abused. This entire system is based on that kind of thinking.”

    Then…

    “Wait a minute, THAT has happened to me. That time I was at the hospital and they threw me into my wheelchair and didn’t care that it hurt… And of course when I was nonverbal they all treated me like a toddler and spoke to my terp or PCA….” And, “Wait, that happened at the doctor’s office, where he wouldn’t let me use the bathroom….” “There was that one PCA who kept giving me a hard time about being Jewish.” “Oh well, yes, this one and that one did break that and that time they didn’t tell me they broke it….” Etcetera.

    What I realized reading this is that most of the time, I have been exceptionally lucky, because I have a lot of friends who have had stuff stolen, been abused in really serious ways, etc. And I haven’t. But even in little ways, when I have the least control — when I’m at the hospital has been the worst — there it is.

    Thank you for writing this. I can imagine it being very painful and exhausting to detail it all, but it’s so important.

  9. OK, this was really hard to read because this HAS happened even with my PCAs I cherish and with friends and family, and it’s so painful:
    “Where they’ll just say to me, “I don’t have time for this” whenever I try to say something. … 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. ”
    I can’t even imagine the number of times I tried to get someone’s attention to say something and they wouldn’t even turn around to see what I was saying till they’d done whatever.

  10. Thank you for taking the energy to write all of this down and explain it in such telling-it-like-it-is detail. I agree these events are the norm and not the exception, and that caregivers more often than not exploit power. People rarely talk about the erosion of one’s life by the daily, under-the-radar events that happen by caregivers who don’t lift us up but break us down. You might be interested in my essay on abuse of people with disabilities in The Revolution Starts at Home (“Seeking Asylum: on Intimate Partner Violence and Disability.” — here’s some info. on it: http://theangryblackwoman.com/2011/07/31/the-revolution-starts-at-home-review-part-2-peggy-munsons-seeking-asylum-on-intimate-partner-violence-and-disability/). I hope you’ll keep detailing your experiences with this as it helps others in the same boat.

    • Thankyou for this wonderfully supportive discussion and info. I have been a victim of intimate partner caregiver abuse and am looking for places of support and understanding. I was severely disabled and now, healing, but still some disabilities that make me need some caregiving – any info or support welcome. I am afraid to even speak much about it as yet.

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  12. Deaf people sometimes face similar resistance to gaining communication access, albeit differently (because the specific barriers we face and the solutions we need differ). For example, some hearing people seem to think that if THEY understand US no communication accommodation is needed. This assumption ignores that WE may still have difficulty understanding THEM and therefore still need an interpreter, for them to write, or whatever other accommodation we are requesting.

    I once sat in a room in which all the other people knew how to sign—not fluently, but enough to communicate at a basic level. (This was basically a group of staff working with deaf children with multiple disabilities, so all signed well enough to teach basic sign vocabulary to their/our students.) They started talking with no accommodation for me. Thinking they had simply forgotten me, I gently reminded that I needed for them to sign to understand. They all flatly refused: they wanted an evening of relaxation without needing to think about communication. So I spent the whole evening completely unable to understand anything that was happening, feeling increasingly resentful about it, but also feeling powerless to do anything about it.

    Once, a doctor refused to arrange for an interpreter to be present during an important appointment at which she was going to inform me the results of some testing I was anxious to learn about (and anxious to identify how to move forward with more action to figure out why I was experiencing what were then mystifying symptoms). The appointment got delayed for weeks because we got locked into our disagreement: I tried to educate her what the law (Americans with Disabilities Act) has to say about this, but she had her own interpretation of the law (that, from my understanding, conflicts with how courts have actually interpreted the law in situations closely similar to ours) and refused to budge. I finally broke down and asked for our appointment to take place by phone so that I could use the interpreter provided by video relay service to understand her. This was not really the approach I had wanted, I had wanted to meet in person so I could read her facial expression and thus pick up on more nuances than could be conveyed by an interpreter. And also so I could immediately obtain any paperwork I needed from her (e.g., referral form etc.). The doctor “thanked” me for being “flexible” and “understanding” of her excuses for not providing an interpreter. But I was not proposing this agreement out of desire to be flexible. I had proposed this agreement out of desperation to learn what my test results were and what could be done next to figure out what was causing my then-mystifying symptoms. I felt resentful that my feeling of extreme frustration and desperation, and my right to fully understand what the doctor was saying about my body and be able to ask questions about it without undue delay, went unrecognized and unacknowledged.

  13. I have asthma, which is normally mild enough that I can chose to ignore it and the only consequence is a little bit of chest pain. But a couple of years ago I had two serious asthma attacks in a few days, both serious enough that I went to emergency. (Note: I’m not entirely sure of the sequence of events, but this is roughly it.)

    The first time, I got great care. My sole criticism is that there were nurses smoking near the emergency room entrance, pretty much the *worst* possible place to smoke from a public health standpoint. But the caregivers were nice, they listened to me, they explained things to me, etc.

    The next asthma attack came a few days later. We went to a different hospital, that we were closer to. It was also a lot busier because it was evening instead of daytime. There, I overheard one nurse talking in loud baby-talk to a patient who’d apparently just had a stroke and was panicking because he/she was unable to speak. I was horrified by this, thinking if I’d just lost the ability to speak I would *not* want someone talking to me in that tone, but I’d be unable to tell them off. Sad to say, my immediate reaction was ‘how can I avoid this person treating me badly as well?’ Fortunately, no one did anything bad to me, but I felt very unsafe. Finally we were seen by the doctor, who gave me three days’ worth of a steroid and I was supposed to arrange a regular appointment to get a more long-term medication.

    Next, at the appointment, we got chewed out for stopping taking the steroid after three days, when that was what I’d been told to do, because he just assumed I was a noncompliant patient. (According to him, asthmatics are often noncompliant with treatments. No idea if that’s true, but even so, it doesn’t warrant that reaction.) In general, he made out that me having two asthma attacks in a row was my fault for not managing my asthma better, when I knew full well that my asthma had suddenly flared up far worse than it had ever been before, and those two attacks had both been triggered by car exhaust (the first by a muffler malfunction sending car exhaust into the backseat, the second by sitting in the car at a gas station where a gas guzzler car was idling) so I’d identified a trigger to avoid.

    I have other stories, such as a doctor who dismissed the possibility of hypermobility (suggested by me based on my online research) causing my joint pain because I hadn’t mentioned knee pain, and when I replied that I *did* have knee pain she assumed I was lying. She also never bothered to tell me when my blood test for arthritis came back negative, even though I was still having joint pain and we still hadn’t found the cause. (A physical therapist later told me I was hypermobile.) In general, I’ve learnt that I’m often more accurate in self-diagnosis than doctors are in diagnosing me, purely because many doctors don’t listen when I report my symptoms. If I even hint at having researched a possible cause for my symptoms the doctors will immediately look for an excuse to insist I don’t have that particular condition, even if it means misrepresenting the symptoms I actually have. I understand that self-diagnosis can be inaccurate because the patient may not have the necessary medical knowledge, but when a patient suggests a diagnosis and explains why they think they may have the condition, it’s worth at least giving the condition a decent consideration. (In my case I explained my suspicion of hypermobility by contorting myself into a ball to show how flexible I am, as well as saying that I’d read that hypermobility could cause joint pain.)

    I’m also a caregiver myself, volunteering in activity programs for disabled people, and I try very hard to monitor my own actions and think about how they’d appear to the person I’m working with. I have done some things I’m not proud of, and there are certain patients I find it hard to work with because they tend to elicit negative reactions in me. In particular, there was one girl with DS and autism who I dreaded being assigned to because she was extremely stubborn (sitting down and refusing to move) and I tended to get stuck in a vicious cycle of escalating attempts to make her move. Recognizing this, I decided to simply request that I not be paired with her, for her sake as well as my own. Other participants I have been very skilled with, and I have gotten a reputation in some cases for being able to handle participants others find difficult. (I don’t find them difficult because they’re the ones who remind me of myself and the strategies that worked on me as a child tend to work on them as well.) I am willing to admit that, though I’ve never deliberately abused my power, I have abused my power unintentionally on occasion. When I do so I try to recognize and fix the problem as best I can.

  14. One thing I forgot to mention, regarding my own caregiving: I’ve noticed one common theme in many of the situations that I handled poorly was that I was thrust into a situation I was not adequately prepared for. For example, being assigned to work with a child and not being told what kind of toileting assistance he needed – I have OCD tendencies so providing toileting help can be quite stressful and I need to psych myself up for it. With this kid, I did the care he needed but I’m sure I had a panicked look and he appeared to have picked up on my distress. I feel ashamed to think of how he must have felt about my reaction. The thing is that if I’d been told he needed this help, instead of finding out when *he* asked for it while actually sitting on the toilet, I could have prepared myself and been much calmer about providing it. Caregivers often seem to be thrust into caregiving situations while knowing absolutely nothing about the person they’re providing care for, in my experience. And while I’ve researched many disabilities on my own time, from other caregivers’ comments it’s clear to me that many have never heard of the conditions the recipients of care are diagnosed with and lack crucial information about the person’s needs as a result. For example, when I was assisting a girl with Rett Syndrome, I was told by the program coordinator that Rett Syndrome is progressive and she would continue to loose skills over time. In fact, Rett Syndrome has a single regression, and after that individuals gradually gain skills. While there are some cases of later regression, they seem to be more a matter of complications of immobility in the more severely-affected individuals, and certainly wouldn’t have applied to this girl (who was unusually high functioning for Rett Syndrome, in that she had a little bit of speech and some hand use). I’m pretty sure I was the only person there who knew about the unique kind of motor problems that come with Rett Syndrome, knowledge that was quite useful in figuring out how best to cue her and also to avoid attributing motor problems to willful disobediance.

  15. I’ve also had people, both medical and otherwise, do things to me in ways that hurt. On purpose.

    I’m sorry. I know many people are incredibly dismissive of any kind of mistreatment involving medical procedures (unless the procedures themselves are really obviously unnecessary even from the perspective of an uninformed outsider). I think it’s one of those areas where a lot of people don’t have the information to know where the line is in any particular case, and find it easier to not think about the issue than to consider the possibility of deliberate mistreatment. (Plus some people buy into the whole idea that doctors, as Authority Figures, are somehow allowed to punish people they don’t like.)

    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.

    That is really common in all kinds of abusive relationships. I’m not sure if there’s a particular term for it, but abusers of all kinds do this to the people they target. The behavior you describe where they try to make you think that no one else likes you and you can’t trust anyone but the abuser happens with abusive marriages, abusive parents, all kinds of abuse. It gives the abusers more power and reduces the chance that someone else will step in and tell the abused person that what’s being done to them isn’t right, or otherwise try to help.

    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 one of the dangers of the widespread tendency to think of nearly all caregivers as perfect angels, and attribute the most undeniable abuse to complete monsters. Because it lets someone who feels hurt by critical remarks change the subject from “This disabled person is being hurt by my actions and decisions and I need to find a way to fix this so they can get their basic needs met” to “I have been called a complete monster, which is mean and unfair, and I must defend myself from this insult.” And then they can go on being abusive without having to take an honest look at their actions.

    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.

    People get so angry about this kind of statement when it’s perfectly reasonable. I’ve noticed it the most with parents of disabled children where it becomes unacceptable to recognize that a mother of a disabled child is anything other than a holy object of enduring perfection to be endlessly venerated.

    All caregivers, including parents, are flawed and will at the least, make some kind of mistake. Being a good caretaker for a disabled person is not purely a matter of having enough of an upwelling of inner compassion, but also involves certain skills and being both willing and able to learn how to work best with that particular disabled person. Being a good caretaker also doesn’t mean being perfect or never doing anything wrong. Some caretakers will commit or be complicit in abuse because of their ignorance. Some will because standing up and refusing to participate involves taking more risk than they’re currently willing to run. And some will commit abuse because they like to hurt people they have power over.

    None of those statements should be controversial or taken as a personal insult to every caregiver ever.

  16. Thank you for this. It had to be very difficult to write.

    You made me realize that I was abused by a caregiver, in a hospital. I never really thought of it that way before – but it was one of those subtle forms that you talked about.

    I have bookmarked this post. Thank you again.

  17. It’s kind of funny because these are all essential parts of psychiatric institutions to various extents. Like they are “the point” above and beyond care.

    Here’s a fun example that is by no means the worst thing I experienced, but that I don’t think I ever told anyone. Basically, everyone was going to lunch except me because I was being confined to room, but thankfully not the quiet room right then. At this point I was supposed to remain where they could see me and wasn’t allowed to close my door. For whatever reason there were a bunch of counselors remaining, too, who were hanging out at the desk area outside my room.

    Anyway, they started talking in raised voices/shouting, laughing very loudly, and generally carrying on in a moderately loud way. I guess they were not screaming and jumping on counters or anything, but it was enough to make me uncomfortable at the best of times. Given that I was under a lot of stress already I ended up crying and unable to talk and tried to hide under the sink in the bathroom.

    Long story short, obviously you are not allowed to hide under sinks, you are not supposed to cry nonstop, etc. I ended up attracting all sorts of ire, although it was expressed through the veneer of concern, and they used this as an excuse to exert even more control over me in ways that were very dangerous.

    When they asked why I had been upset and hiding in the bathroom, I told them two things. One was that they were being very, very loud. Another was that it would be extraordinarily helpful to me if I could spend a little time alone with my door closed.

    I got two answers to this. One was a lady counselor telling me in a very sympathetic tone that they hadn’t been loud, I just THOUGHT they had been loud when they hadn’t really. The second was that I was not allowed to be alone ever so I would have to act like they wanted without any privacy.

    What’s interesting to me is that there are two things going on here. Obviously, they were discounting what I was saying, accusing me of making the problem up, and then punishing me for the problem they created in a very deliberate if unintentional way.

    The second is that they were discounting my experiences as less valid. People “like that” might FEEL like moderately loud things bother them, but since normal people aren’t bothered by those sorts of sounds it doesn’t matter and there is no reason for them to try to do things differently.

    These were, relatively speaking, the “nice ones.” The people who I liked and who didn’t give me as many problems. But they were still totally unwilling to consider that they might have been doing something harmful that they could have avoided.

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  20. This was a very interesting read. I’ve been a caregiver for many years. I must say that many of the generalizations in your articles and in the comments that followed have concerned me. I would defend the work that I have done with any of the individuals that I have served.

    Before I go on further I just want to acknowledge that caregiver abuse does exist and I have witnessed the actions of people who simply *do not* belong in the direct care field.

    That said, I would urge anyone whom receives caregiving services to consider how a caregiver feels. Typically we are low-wage, under trained, and inexperienced. It’s not uncommon for us to work 10 to 12 hour shifts wherein we are left to supervise and protect many individuals with vastly different caregiving requirements.

    We are responsible for cleaning, cooking, and running outcome programs established by case managers and health professionals. Passing meds accurately for 15+ individuals has been regular in my experience. And at the end of our shifts, we are required to maintain documentation that is legally binding.

    Consider these responsibilities. Now consider rarely being appreciated for fulfilling them.

    Should this excuse some of the examples that were outlined in this articles? Absolutely not.

    However, caregivers are human beings with emotions. Working in direct care is not that same as any other job. We develop relationships with the people we serve, whether we try to or not. And not feeling appreciated by people we care about can be very taxing subconsciously to the inexperienced caregiver (which is the lot of us). When that happens, anger, fear, and frustration can seep through.

    Many caregivers work hard for little pay and no appreciation. Many caregivers are good people and try very hard to support and encourage the people we serve to become more independent. Many caregivers are selfless people who like what we do.

    Do we need to do better? Yes. Do we need to ask agencies to develop better systems with that strictly adhere to providing rights to the people they server? Yes.

    If you find that a caregiver’s attitude toward you is changing, try giving them a compliment or telling them you see them working hard. I would bet that attitude change with revert back to being very positive.

  21. I just read over my entire post three times.  

    The only things I could find that generalized about caregivers were that:

    1. Caregivers have a tremendous amount of power over disabled people. 

    2. Caregivers are not the idealized angelic figures that most people see them as. 

    The only other thing I could find that even looked like a generalization was that disabled people should not be alone with a caregiver after we fire them.  That’s not a generalization because it doesn’t say that caregivers will always become abusive when fired. It just says that it’s impossible for disabled people to tell when this will happen, so we should err on the side of caution. And we should err on the side of caution because we are less likely to be able to defend ourselves if something terrible goes down. 

    I actually completely agree that caregivers are human and have emotions. In fact I think I pretty much said as much, up where I was explaining why universal tendencies to abuse power are no less universal because a person is a caregiver. Abusing power doesn’t make someone a predatory monster. But it does create the potential to do a good deal of harm. 

    I confess being alarmed at your last statement, “If you find that a caregiver’s attitude toward you is changing, try giving them a compliment or telling them you see them working hard. I would bet that attitude change with revert back to being very positive.”

    Not that it’s a bad idea to do those things. I make a habit of doing those things.  

    But the only time in the post that I referenced someone’s attitude changing, was when I described the woman who began to abuse me after she learned I was moving away from her. And she explicitly told me it was a screwed up response to abandonment issues. Not that I had somehow stopped appreciating her. 

    I haven’t found that showing appreciation for people makes them stop being abusive. Sometimes it even makes them more abusive.  But that’s because that is what this post is about — caregiver abuse, not caregivers who are less than thrilled with not being shown their idea of proper appreciation. 

    I do tend to show caregivers appreciation when that’s possible.  But focusing on that when people try to discuss actual caregiver abuse makes me really nervous.  Especially because of so many experiences with people treating me like total shit because of things that come down to manners — a thing that’s difficult for lots of autistic people to pull off even when we don’t, say, have a bad migraine that day. 

    (As I did the day I got a tongue-lashing for mumbling “uh-huh” from under a pile of blankets instead of leaping out into the horrible bright light and typing “yes please”.  My roommate tried to explain but no explanation was good enough. Eventually it came out that the staff person in question was in this line of work for the high that gratitude gave her, and she was willing to be positively nasty in order to receive it.  Honestly I think that motivation for entering the field explains a lot that goes on in this field. Not just between clients and staff, but the drama level between staff that current and former staff tell me is worse in the “helping” professions than any others they’ve been in.  My mother had to quit the medical field for her own sanity over the drama.)

    At any rate I try to be as nice to staff as I can manage that day. But it’s important to understand that not all disabled people have that luxury and they’re not all horrible people if they don’t give out enough compliments. (It really depends on the reasons.)

    I’m actually terrible, though, with small polite-words. So terrible I literally flunked a communication test as bad as I could flunk it. Because the entire thing was “How often does this person say hello, goodbye, please, thank you, you’re welcome, etc.” 

    So what I did once when someone very emotionally sensitive seemed hurt about it. Was I explained that just because I didn’t say those things didn’t mean I didn’t feel the things associated with it. I explained to her everything I was aware of about what she had done for me. And then I basically said:

    1. When I make little grunting noises at times those words would be applied, that is as close as I can get to saying them. 

    2. When I’m not even making those noises, I’m still experiencing the same things a person does when they’re going to say them (possibly more so than when some people say them by rote). But it’s impossible to do it right then. 

    So just imagine it as if I’m saying them, and you’re getting the idea of what I would do if I could. 

    And things with her improved right away. 

    But again. By “things” I’m talking about average interpersonal communication breakdown. Not abuse. She was not doing anything horrible. She was not even looking to me to fill her emotional needs for gratitude. She just thought I didn’t care when I did, and it was easy enough to fix. 

    I also notice that often the disabled people who most need more help don’t get it. Because they act like people whose basic needs (as in food water shelter hygiene etc.) aren’t getting met. And people whose basic needs aren’t getting met tend to be, and act, intensely distressed. 

    There was a long stretch of time when I was considered very angry. This was because my case manager was not capable of meeting my needs. On a very basic level. Like he couldn’t get all my medical care down. And I was among other things turning up at the ER all the time for dehydration because there was no system for ensuring I was hydrated. And it was quite bad.

    And since I was literally fighting for my life, I wasn’t capable of politeness. And he thought of me as being unreasonable. I really liked the guy on a purely personal level. But I couldn’t talk to him without ending up cussing because it was one crisis to another to another.  And he was the one guy supposed to be responsible for all this. 

    So resentment developed. On both sides. By the end he was treating me like it wasn’t even possible to meet my needs. That I was expecting too much. Except… The next two case managers have been great with few complaints from me. And people think the change in my attitude is confusing. 

    But my attitude hasn’t changed. My situation has changed. I’m no longer in danger. Or no longer in easily preventable danger. 

    And all the time I see this playing out around me with other disabled people. Sometimes their needs get met. Usually, then, they’re no longer seen as perpetually angry. 

    But sometimes their needs are never met. Sometimes they’re forced to exist in constant crisis mode. And then, often, they’re demonized. By staff, for not showing them enough appreciation. By agencies, for being “angry”. Some of them get passed around between agencies. Some of them get dropped by all agencies. Some of them die. But that’s okay, because at least they aren’t around to be grouchy and out of sight out of mind and stuff. 

    Not all people with bad reputations are undeservingly so. Some are truly obnoxious people.  (Seriously I’ve known some.) But they still need services. And a lot of people with bad reputations are in bad situations and are surviving by the skin of their teeth. If that. 

    And just… that gets ignored in these conversations. The fact that it’s about more than feelings. That’s another part of the power difference.

    • Of course people in need of services are not bad people for not bending over hand and foot to compliment caregivers. Like I said, I find it a very rare occurrence even after many years in the field.

      No person should ever be denied services because of outbursts or behaviors.

      It’s interesting what you say about a case manager whom you worked with. You say everything that was happening to you was his responsibility~ is that not the very kind of misdirection and uncaring attitude you bestow upon caregivers you have had experience with? A case manager does not see you day in and day out, yet you blamed him and lashed out for the poor experiences you had. Was it entirely unreasonable for him to think you were exuding behaviors?

      Nearly every “disabled” person I have met has expressed a desire to be treated “normally.” Is that not exactly what your case manager did? If an “able” person did what you did (yelling, cussing, getting angry for reasons not apparent to him without explanation), would the case manager not in a way dismiss part of what was expressed as a behavioral outburst? Of course he would. (I use quote around “disabled” and “able” because I do not personally make that distinction)

      I have worked in many facilities throughout my career. Some had bad policies that needed to be changed. Some had a staff member that needed to be fired. However most were well organized, balanced, and overall very positive places.

      I have not lived with physical or mental conditions. I do not begin to understand what ailments and fears are felt by those who do. Sometimes I wish I did know as I think it would make me a better caregiver. That being said, every facility I have worked in was by and large safe, routine, and a much better place to live than where my own private life has taken me. I have never worked in a facility where any resident was “dying” or “hanging on by the skin of their teeth.”

      You acknowledge that you have sometimes lashed out to those whom you liked personally. You have acknowledged that there are some who need services because of their conditions. Could your fear of dying and perception of endless tragedy not too be something where services could help? We have not met but you seem like a very able person. Have you not ever thought that perhaps there may be organic causes to your fears of death and tragedy?

      If you or anyone you witness is ever being denied basic needs like food and water, contact the police or your local human services department.

      • A-
        I’m not the blog owner, but I’ve subscribed to the comments and overall have been moved and found this topic quite meaningful. When I read your comment today, I felt sad, frustrated, discouraged.
        Since you seem to really want to understand and discuss this topic, I was wondering if you would you be willing to consider taking this discussion — your questions and assertions — to someone who can give you what you’re looking for in the way of discussion, empathy, or shared experience who is not disabled and/or has not suffered caregiver abuse? Perhaps a nondisabled ally who works in the field of disability rights or advocacy who would enjoy swapping perspectives and experiences with you?
        For me, doing so would would be an act of compassion that I would appreciate, as this topic is triggering.
        Thank you for considering my request.

      • A.’s Guide to Writing Comments:

        Step 1. Completely ignore differences in relative social power and perspective. You obviously notice everything a more stigmatized person would notice and experience all environments the same way more stigmatized people experience them.

        Step 2. When responding on a blog, do not take the time to figure out what they mean by various words and things, even if the blogger has clearly explained these things multiple times in the past. When you respond just put the words that are being used differently in quotes and move on.

        (Whatever they were trying to communicate couldn’t have been that important anyway or they would have used the kind of words you use.)

        Step 3. Assume that people respond to more stigmatized people basically the same way as you. When a more stigmatized person talks about a problem, either tell them that the problem doesn’t happen (or hardly ever happens) or suggest solution that rely on the relative social privilege you possess, like being able to call the police for help without serious fear of reprisal.

        Step 4. If you make people uncomfortable, just keep going. Do not take a step back and try to figure out why a more stigmatized person might have a different opinion than you.

        This concludes today’s mini-satire. Have a good day.

  22. “I also notice that often the disabled people who most need more help don’t get it. Because they act like people whose basic needs (as in food water shelter hygiene etc.) aren’t getting met. And people whose basic needs aren’t getting met tend to be, and act, intensely distressed. ”

    I’ve actually noticed this in terms of homeless people approaching me on the street. Due to overload, fear about harassment, etc I strongly dislike people approaching me on the street, but if I’m out by myself during the day it’s pretty likely that a homeless person will eventually approach me to ask for something. My personal ethic is to try to judge both how much time/money/food/whatever I can spare right then and compare that to whatever need they’re expressing. If what they’re expressing is just “I’d like money” I refuse and if I don’t HAVE anything to give them to help (say if I have 3 dollars in my bank account and no money on me) I will refuse too. I’ve given people money for food, bus fare, gas, etc on other occasions because they explained something plausible that made sense and at least right then I had the resources to help.

    Even though I hate people approaching me I find that homeless people usually go through great pains to make me comfortable. They apologize for approaching me, they smile, they thank me, even when I haven’t done a thing for them. I often end up not feeling the least bit threatened, but for me that’s because I’m recognizing the behavior of someone who is himself terrified of being seen as a threat and trying to perform as a “good homeless.”

    The people who I almost always go out of my way to help though are the people who DON’T do those things. Like the person who wouldn’t quite leave me alone and started questioning me what I was doing walking around down town if I had no money. When I explained to him that I had a debit card he pointed out that if I was telling the truth about that being the reason I could just go into a smoothie store right next to us and buy him so food using the card, something I ended up doing despite how unpolite and frustrated he seemed when he was asking me. “Entitled,” I think a lot of people would say.

    It turned out he hadn’t eaten in a few days.

    (This is relevant to your post too in that he WAS disabled… he was deaf and looked like he had recently had a stroke, things that definitely DON’T make it easier to be “nice.” Suffice to say the conversation between him and the overloaded autistic person with CAPD that is myself was rather frazzled.)

    It’s so strange to me how there are these standards for how a person acts if they “really” need help that we are supposed to meet, but that these standards that get harder to meet the more you actually need help. I absolutely think any homeless person deserves assistance with food, shelter, etc regardless of the reason that they’re homeless but I’m pretty sure the homeless people who can smile get the most money and the least harassment while the one’s who can’t get it the other way around, even when they need help the most.

  23. I know this is an old post, but I just want to throw in that you are NOT unreasonable for asking a PCA to put stuff where you want it when moving. Speaking as a person who has been a PCA, it is your home and a PCA’s job is to do things that you can’t do for yourself. And a person with a disability often needs things in a specific way for specific reasons, that a PCA might not be able to predict. Not arranging stuff according to your wishes could even be a safety hazard. And if an able-bodied person had a friend helping them move, they would certainly give the person instructions on where things should go.

  24. Pingback: Love me or hate me, this is my response to a comment that to me tipifys the worst aspects of the Autism Community. | seventhvoice

  25. Amanda, I am an Aspie who has been working as a Caregiver for a person who allegedly was suffering from Physical Disabilities only and required help with heavy lifting, yard work, laundry, vacuuming. I’ve learned to “maintain my cool” under most circumstances. While initially working with this person I felt a lot of sadness for them — it seemed they’d been taken advantage of, stolen from, subjected to violence — and then I learned more about them, as they’d had quite a violent past which had attributed to some of the injuries they’d suffered. I am a very gentle person and will tolerate quite a lot of verbal aggression from people before I have a melt down or even show that I am upset. Since childhood, I had to learn to hide whatever feelings were arising in me that seemed to be overwhelming me, because I’d grown up knowing there were people who would see that vulnerability in me and use it against me. That is one of the problems of being autistic and at the mercy of so-called “normal” people.

    As I worked with this person, I realized they’d been attempting to hide some form of mental illness from the world. As a Caregiver, I am expected to be accountable for everything and respecting of the client’s feelings and requests that are reasonable and ethical. This client began to become verbally aggressive with me and then totally insulting. Forms would arrive that were intended for me to fill out and the client would threaten me with physical harm “if I said anything about their behavior toward me.’ I ignored these threats and stated honestly what was occurring, because what is stated on these forms is in the best interest of the client. A person who needs treatment for a serious problem they continue to keep hidden from anyone who can help them puts themselves and others around them at risk. I did my best to dismiss this behavior as associated with this person’s chronic pain, but spoke with two of the Doctors and was told that the client’s behavior was “unacceptable and I absolutely should leave the position” — although there is no one else who seems interested and this client has mood swings and does not want me to leave. In fact, when Doctors speak with this client, that is what they are told: “I am a wonderful caregiver and the person does not understand why I would want to leave!” Like day and night, with this person. Allegedly just suffering from Depression (at least a bit of progress has been made).

    Amanda, you seem like a wonderful person and your requests were not unreasonable and whoever these caregivers were that had been sent to work with you, I am genuinely astonished at their lack of professionalism and basic consideration toward you. No rational person walks out on a client — even one who really is scary and unreasonable as the one I’ve been working with — failing to provide services to them that they needed. You weren’t acting out in dangerous ways toward anyone. For so-called “Neurotypical” people to judge whether a client is being demanding or non-compliant without even comprehending what is happening with that client is completely unacceptable. As for choosing who to allow into your apartment, you have a right to choose whether you do not want to tolerate the company of certain people who upset or annoy you.
    People with autism usually are not “great” or even good with small talk or “have a nice day” kind of sentiments. Sometimes they enjoy or really need some time alone (with a cat is okay). It is completely understandable the reasons you had for being angry — it’s not easy being autistic, but it’s a lot worse when you’re also misunderstood by people who are being PAID to care for your well-being. The first half of the word caregiver being CARE means that people who clearly don’t care do not not deserve to be paid for a job they are not doing, or are doing badly. Power trips have no place in relationships where people need or receive care. Anyone who is incapable of caring for others should not apply for or be hired as a caregiver. When I leave the position I’m in, I will ONLY world with other people who are “on the spectrum”, as I’ve done so before and needed no one to train me in how to work with or advocate for an autistic client! PS: Any medical personnel insisting that a patient take treatment to which they’re allergic are subject to being reported to legal authorities. Patients have rights. Always read contracts carefully before signing off on them or have a trusted advocate with you as a representative. Any Doctor or other Medical professional who refuses to allow a person you appoint to represent you accompany you on appointments or question medications prescribed is putting your life at risk. No one has the right to do this.

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