BADD: Caregiver abuse takes many forms

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.

Aspie Supremacy can kill.

A disclaimer: I don’t believe in real distinctions between aspies, auties, LFA, and HFA. When I use these words I am discussing the beliefs of people who do believe in them. Edited to add: aspie supremacy is a shorthand and people should be aware that the prejudice contained within it can and does affect many with the AS dx.

I think I am the person who coined the term autistic supremacy. At the least, I came up with it without having heard it before. It was 1999 and I came up with the term to explain certain trends to my psychologist. This, by the way, means that those people who are running around gloating about how us autistic activists brought these people’s offensiveness on ourselves, or ranting about how nobody cared until recently? They have no grasp of the history. None at all. I have been opposing this in all its forms for eleven years and know that others have been doing the same.

Others may use the terms differently and I don’t claim some kind of ownership over the definition but here are the ways I use these words.

Back then it was just a tiny number of people who thought this way. When I used the word, I meant people who went beyond just wanting equality. They thought they were better than nonautistic people. Not just in satire or jokes but for real. Some of them went even further and considered nonautistic people worthless or even worthy of death or being rendered nonexistent by (a distorted idea of) evolution.

A friend tells me this sort of thing is a normal, perhaps even necessary, part of a minority group’s journey to self-acceptance. Maybe, but it still leaves a bad taste in my mouth.

Some people consider separatism a form of supremacy. I don’t, not unless the separatists are the ones with the power. A white separatist is a white supremacist and a segregationist. But when a minority (in terms of power) is separatist the reason is usually self-protection as much as anything. Sure, some supremacists become separatists but that doesn’t mean all separatists are supremacists. I am not a separatist but I understand the impulse to avoid those with the power to do you great harm.

When I use the term aspie supremacist I mean something more specific. I am referring to “aspies” who think they are superior to other autistics, or to “AS/HFA” who think they are superior to “LFA”. In practice this means, “We aspies are just different but autistics are defective”. “AS/HFA is part of human diversity but LFA has no value”. It’s the Carleys of the world cringing at the very idea of sharing a label with people who wear diapers (the joke’s on them as many “aspies” wear diapers too). It’s any and every way that the value and contributions of “AS” and/or “HFA” people a put above the value and contributions of “autistic” and/or “LFA” people.

Aspie supremacy is disgusting and despicable. I understand that all of us absorb certain cultural values but that is what makes aspie supremacy more dangerous than general autistic supremacy.

Autistic supremacy can do damage but it’s limited damage. They have neither power nor numbers on their side. They can rage on the Internet. They can cause damage to the few people around them offline. Even if one decided to cause as much harm to everyone around them as possible it would be tragic but in no way equal to the harm done autistic people all the time. Usually the most harm they do is getting people to believe that most autistic activists are like them. They just don’t have the power to do wide-scale harm.

But aspie supremacists… where to start. Their ideas are essentially very similar to the ableist society we all live in. A society that values “high functioning” whatevers over “low functioning” whatevers where the further you are from the norm the more “low functioning” they call you. Have you ever wondered why some of the people who hate autistic activists the most are often just as willing as the aspie supremacists to put AS/HFA in one corner and LFA in the other? To say “Maybe aspies are part of human diversity but Real Autistics ™ are defective?”. It’s because the aims of aspie supremacy are very close to the views of those in power. And to someone like me it’s a fricking slap in the face, and worse.

I am far enough from the norm that even my talents and objections do not keep me away from the idea of “LFA” and out of grave danger that puts me in. My body has permanent and life-threatening damage, the kind most common today in places where there are no doctors or vaccines, and all but forgotten in America. That’s because medical professionals have not seen me as a valuable enough person to treat. Once while I was beginning to go septic I heard one medical professional tell another I had the cognitive functioning of an infant (something I don’t believe of even people with the lowest IQs). I had no way to contradict him because I can’t speak and was too weak to type or do anything but squirm and wail.¹ I have heard professionals say out loud that my life was not worth saving, that I really wasn’t a person, nobody home.

This means I am vastly more in need of being seen as an equal than people closer to the norm are. This is the part that neither aspie supremacists nor anti-autistic-activist types ever seem to want to get: On average the further from the norm you are, the more it is literally a matter of life and death that your value be seen as equal with the people with the most power. (I know there is life and death stuff for those closer to the norm too but we are talking averages.) So aspie supremacy is a threat to my life in a way that general autistic supremacy is not. Aspie supremacy is telling those in power, “You are right about those auties/LFAs/whatever, but not about us aspies. Why don’t you just let us in to that big room full of valued people, and close the door in the face of those who need the protection of that room even more.”

Also, anyone who argues that aspies should be protected from institutions (of all shapes and sizes), aversives, unproven medical treatments, and the like, but that LFAs “need” those things? That it’s a tragedy when someone kills an aspie but understandable (and perhaps even preferable) when someone kills an LFA? You and anyone who listens to you is doing the exact same thing. The more vulnerable you are to the worst of the ways we can be treated, the more protection you need from the idea that it’s all worthwhile or understandable for you if not for the more normal ones. This too is reminiscent of aspie supremacy in different clothing. It’s all more and more devaluation and it’s endangering the rest of us.

I know that to many aspie supremacists it doesn’t feel like that’s what they’re doing. It feels like they are just stating common sense, that aspies have more valuable skills, more logic, less dysfunction, whatever, than other autistics. But that’s because having a bit of relative privilege renders them unaware of the full consequences of their actions. They don’t realize that they have things backwards — the more devalued you are, the more you need equality, the more you need to be considered another important part of human diversity, etc. Not the less. And “less” is what aspie supremacy ends up meaning to those of us who (even when we have some very valued skills in a few areas) are more vulnerable to devaluation and all of it’s effects. Including the lethal ones.

¹ Edited to add: When I say this I am not meaning to imply infants should be devalued. Generally when a medical professional makes the rapid judgement that someone “has the mind of an infant”, it’s a code word for “nobody’s home and we can do whatever we want”. This does say a lot about how infants are devalued.

A useful link

When Allies Fail

Something I would add is that when these sorts of things come up for any group of people (autistic people are far from the only ones, there is much culture and class-based stuff in there as well) whose normal way of interacting has been considered by those with power to lack “proper” social skills… when we get angry at people who perpetuate some form or another of prejudice or oppression is NOT the time to start lecturing us on how our social skills are atrocious and we need to calm down and be polite before anyone can listen to us. That is just adding a whole new layer of fail on top of whatever the original one was, and trapping us into a situation where we need to communicate in the same way those in power do before those in power will listen. (Which is false anyway. When we do manage to communicate in that manner we are usually ignored. Which means the insistence that we all communicate in that one way is just another way of not listening. Which is why it pisses me off so much when I see so-called allies demanding perfect decorum from those they are supposedly allied to. It’s really just another twist-and-turn of power play and will doubtless just cause a feeling of impotent rage in anyone it’s applied to.)

Still working on the cat posts. And right now lying back to back with a cat in yet another mode of cuddling.

Breathtaking to behold: talking back to dismissal

One of my biggest interests is the study of how oppression plays out, and how it is resisted, among communities that most people would consider minorities. (Note: Minority in amount of power, not in amount of numbers. So yes, women count.) Not some sort of study of victimhood the way some people would paint it, but rather how people resist becoming victims.

It is breathtaking to behold communities where enough people have worked out the way things work, that when they are hit with the usual forms of sexism, racism, ableism, heterosexism, etc., they are ready for it. They have answers to the usual bothersome questions and comments designed to disempower them. Even if the people attacking them don’t understand those answers, they at least are told a lot of the same things by a lot of people.

It’s breathtaking because we haven’t reached that point in some of the communities that I work within, including the autistic community. It’s like we’re almost there, but not quite. So a small number of us end up sticking our necks out and a large number seem to either understand but not be able to articulate it, or else not understanding yet what’s going on.

This isn’t because we’re too autistic to understand (which is in fact one of those obnoxious power plays, rather than a reality), it’s because as a community we’re just not quite there yet knowledge-wise. It’s been like this for other communities in the past, it doesn’t have to be like this for us forever. I don’t always even have coherent answers to a lot of what goes on, because this is not easy work by a longshot, but I think it’s work worth doing.

What would be cool is if eventually we all just automatically understand what is going on when people say certain things to us, and from that understanding (plus some time for thoughts to congeal into words), know what to say and how to react. My problem half the time is understanding but not knowing the words.

But imagine that, if anyone ever told us…

…”You’re not really autistic.” or “You’re not really autistic enough.”

(“You just have Asperger’s,” “You’re too high-functioning,” “You understand your situation too well,” “You’re too articulate,” etc.)

…”You’re too autistic.”

(“You lack the empathy necessary,” “You couldn’t possibly understand,” “You lack theory of mind,” etc.)

…”You’re too much like children and confusing us with your parents, somehow.”

(“You’re just like adolescents rebelling against their parents without understanding why the parents know best,” “You’re just like small children who can’t possibly understand the adult world,” “You’re just like little children who want to do whatever you want and can’t understand why your parents don’t want you to do that,” etc.)

Etc.

…then there would be an immediate, coherent response to each one, explaining why this is not an okay way of treating us or viewing us, explaining how the misdirecting of other people when it comes to us works, explaining why this is not okay… voiced by enough of us at once that it would be harder to ignore than the current sporadic response to it.

We’re getting there. See Bev’s Are you autistic? and I repeat myself. But we’re not there yet. And it would be wonderful for a lot of us to work towards this until we are, until we can throw answers back at that stuff easily. Because I’ve been watching these comments thrown at self-advocates for ten years and they never truly change in substance.

[Note also that I'm not going to be taking comments that actually try to explain why those particular ways of dismissing us are actually real or good or right. So don't bother. Because this blog is about how to work towards this kind of change, not about getting the conversation derailed by people who think we shouldn't even be trying to.]

An Antidote to X-ing

This is intended for the Disability Blog Carnival. The topic this month is, “I am.” The carnival is posted at Emma’s blog.

I’ve posted many things like this before, but I don’t know where they are, so I’m writing it over again in slightly different form. A little repetition of this concept never hurt anyone anyway. :-)

(See this entry by Anne for a better description of X-ing than I could ever hope to write at the moment, as well as a broader description of what I am talking about in this post.)

An Antidote to X-ing

It is not arrogant, stupid, foolish, bad, meaningless, or wrong to say that you exist.

There can be a lot of very strange patterns in the rest of the world, some of them involving people, some of them not, some of them seeming to come from inside of you, all of them basically boiling down to the message, “You do not exist,” in one form or another.

Especially if your existence is not something some people want to know about.

Especially if you are in one form or another dissenting from the views of seemingly very powerful people.

Especially if you are accustomed to taking people at their word, even when their word is, “You do not exist.”

Especially if you have been trained to endlessly repeat that mantra for them. (You may even have been taught to repeat it to others, and thus, for each moment you do that, go through the motions of that same destructive pattern.)

Especially if you have been taught that reality (especially the piece of it you inhabit) is upside-down, inside-out, and backwards from what it is.

Especially if you have been taught that existence is unimportant.

Especially if you don’t fit some usual pattern of existence that most people are looking for.

Especially if you have been led to believe that existence is only for people something-er than you. Cooler, smarter, better, stronger, whatever. That for the little piece of reality you are to exist without apology or shame, is arrogant or uppity.

Especially if you have been led to believe that to exist, you have to do, or understand, something complicated, something abstract, some grand and enormous theory about the world.

Especially if you have been trained to be the plaything of people who think that power consists of deluding themselves into believing they’re warping existence to fit their egos.

Especially if you have been trained to ask permission, and apologize, for something as simple as breathing.

Especially if you have been trained to view an assortment of superficial traits as who you are, by people who for whatever reason believe that themselves.

Especially if you have been taught that you have to know who you are, to say that you are.

Especially if you have been taught that existence has to come in a package of intellectually rigorous words all lined up in rows and stuffed into endless books to be devoured by an elite who have access to them.

Especially if you have been taught that existence is some other kind of secret, rather than something that is going on around all of us, all the time.

Especially if you have been taught that asserting your existence is somehow the same thing as the hubris in claiming that the flimsy imaginings of a vain ego are important and real and central.

Especially if your existence is one of those frequently deemed worthless, inferior, defective, and overly expensive.

These things can seem to weave a complicated web around you, and that can seem to control you, distract you, make your mind run in useless circles every time you come close to the idea of existing.

That can seem very complicated indeed.

But one thing, is very simple.

You don’t have to even think it, if even the thought of your own existence triggers some cascade of misdirection.

But it’s there.

It’s always there.

And that fact can’t be taken away.

It’s a very simple fact.

But simplicity is a strength here, not a weakness.

This fact is very powerful.

It unravels all that complex nonsense and shows it for what it is (even with all the complex nonsense in the world trying to claim otherwise).

It’s simpler than even the two words used to describe it.

That fact is:

“I exist.”

Without that, all the ideology in the world will be useless at best, and backfire at worst, becoming part of that strange pattern of destruction.

The more we are told not to exist, or that we don’t exist, then the more we need to assert our existence.

Not necessarily in words.

Not necessarily in ways that everyone would understand.

But certainly in ways that are active and meaningful, and going on from there.

I exist.

People can be a bit like water.

(I wrote large parts of this post while unable to read, so I apologize for any areas I might have left unfinished or confusing.)

I was talking to a friend recently, who was confused about why it was that people encouraged her to become more assertive, and yet became angry when she actually was more assertive and it conflicted with their wishes.

Which reminded me both of a lot of my own experiences, and of one of my favorite passages from the first Harry Potter book:

Neville stared at their guilty faces.

“You’re going out again,” he said.

“No, no, no,” said Hermione. “No, we’re not. Why don’t you go to bed, Neville?”

Harry looked at the grandfather clock by the door. They couldn’t afford to waste any more time, Snape might even now be playing Fluffy to sleep.

“You can’t go out,” said Neville. “you’ll be caught again, Gryffindor will be in even more trouble.”

“You don’t understand,” said Harry. “this is important.”

But Neville was clearly steeling himself to do something desperate.

“I won’t let you do it,” he said, hurrying to stand in front of the portrait hole. “I’ll — I’ll fight you!”

“Neville,” Ron exploded, “get away from that hole and don’t be an idiot –”

“Don’t you call me an idiot!” said Nevile. “I don’t think you should be breaking any more rules! And you’re the one who told me to stand up to people!”

“Yes, but not to us,” said Ron in exasperation.

Anyway, what I said in response was that people seemed to be a lot like water. Water spreads out to take up whatever space the container it is in allows it to take. People, also, seem to spread out in a similar way in terms of what actions they view as okay for them to be doing. And they rarely notice all the space they are taking up, until some person or event makes it clear to them. It just feels ‘natural’ to take up as much space as they’re allowed.

So Ron Weasley sees Neville being bullied by Draco Malfoy. And he sees this isn’t good for Neville, so he encourages Neville to stand up for himself and stop being a doormat.

At that point in time, though, Ron is not even imagining all the things he himself does, that Neville might object to. The space that all his actions take up, and their effect on Neville, and Neville’s possible opinions of them, are totally invisible to him. So he is not even thinking about that when he tells Neville to grow some backbone and stand up to people more. He is thinking only of the actions of other people. He is outside of those actions, and therefore more readily able to see their effects on other people. It’s much harder to see those effects of your own actions.

So Ron is used to taking up a certain amount of space with his actions, and to Neville not resisting in any way. When Neville does resist, and relates it back to Ron’s encouragement to assert himself, Ron is totally surprised and not at all pleased. Aside from the urgency of Ron’s actions at that point in time, Neville is now forcing him not to take up all the space he’s accustomed to taking up.

Neville is later awarded points by the headmaster for what he did there:

“There are all kinds of courage,” said Dumbledore, smiling. “It takes a great deal of bravery to stand up to our enemies, but just as much to stand up to our friends. I therefore award ten points to Mr. Neville Longbottom.

And that is why Neville was one of my favorite Harry Potter characters from the first book onward.

Anyway, the fact that people take up so much space without being aware of it, is also apparent in how people handle power relationships in general. And it explains a good deal of the seemingly bizarre effects of people with less power or privilege in a certain area standing up to people with more when demanding equality and justice. It’s pretty often that the people with more privilege in whatever area is being discussed, are completely nonplussed and view demands for equality as actual attacks on whatever group of people have more power in general.

I wrote about this in an old post, What Happens When You Ignore Power Relationships. It was regarding a psychologist’s review of Irit Shimrat’s book Call Me Crazy. In the book, Shimrat had talked about many genuine abuses of power in the psychiatric system. Things like solitary confinement, torture, forced drugging, degradation, humiliation, and in general being treated like a lower caste of humanity. Things that are human rights violations by just about any standard.

Sheila Bienenfeld, the psychologist reviewing the book, said:

As a psychologist who for several years (eons ago) worked in a psychiatric hospital, I had some trouble with this seeming wholesale dismissal of psychology and allied professions. It was a bit of an injury to my professional narcissism. But one of the motifs of Call Me Crazy is that Shimrat and many of her fellow “survivors” feel that in their times of personal crisis they were treated by psychiatrists and psychologists, social workers and nurses, as incompetent or simply bad: their value as human beings was derided and their opinions dismissed. My feeling of being discounted and unfairly stigmatized in this book parallels what Shimrat and her colleagues often felt as patients.

The emphasis in bold is my own. Bienenfield is used to taking up a certain amount of space, at the clear expense of psychiatric patients. When Shimrat pushes back in attempting to regain her humanity, Bienenfield makes the ludicrous assumption that her experience of having her feelings hurt (as well as having it asserted that she as a professional ought not to be allowed to take up space at the expense of the human rights of psych patients) is equivalent in any way to Shimrat’s experience of captivity, degradation, and torture.

As I wrote in my last post at the time:

Am I to assume then, that Irit Shimrat and her co-authors locked Dr. Bienenfeld in a small room and would not let her out until she renounced her profession? Did they put her in a building where her every movement, statement, and feeling was noted and controlled by anti-psychiatry activists who repeatedly put pressure on her to stop practicing? Is she unable to practice her preferred profession or even state it openly for fear of housing, educational, and job discrimination? Do the police watch her more carefully when they find out that she is a psychology professor?

Are there a constant stream of articles in “reputable” newspapers that imply that violent criminals tend to be psychology professors? Does Bienenfeld lack any sort of standard recourse when Shimrat publishes her views on people like Bienenfeld? Does Bienenfeld have to worry, when she publishes opinions like this in a book review, that people will not take her seriously anymore, and may even discriminate against her?

Would it be possible for most people to truthfully relegate Bienenfeld’s views to a relic of the seventies (even though they’re being expressed in the nineties) and totally dismiss what she has to say on that basis? Is psychology treated like a joke by people with the real power? Would Bienenfeld have to struggle to get a book published about her views on psychology and keep it in print? Would it be close to the only psychology book out there, and then fade into obscurity almost as soon as it was published? Does she have to constantly have to remind people she’s not a cult member?

Those are the things the reviewer is blissfully unaware of when she equates the fact that she is being asked to do a few things differently in order to avoid hurting others (that is, the space she’s unfairly taken up in the past is being pointed out to her), with all the experiences above that Shimrat and those like her actually have had because of people just like the reviewer.

But, as I noted to my friend, I’ve been on the other side of this one too, and when you are, you really can’t always see at the time how ridiculous you’re being. Unfortunately I can’t recall all the details. But I remember at some point realizing that some viewpoint that I had held, and acted upon, for quite some time, was part of a racist pattern that had severe negative effects on other people. Nobody told me directly. I figured it out while reading a book by women of color. But I realized that my attitude, and actions, had directly and indirectly harmed people, and would have to change.

My first reaction, though, was not “Oh good, I’m glad I know this so that I can change it.” My first reaction was more on the order of, “Oh come on. I’ve been doing this the same way most of my life. Who does anyone think they are to tell me to do it any different? There’s a significant chunk of the space I’m taking up that people are telling me is harmful to them and that I need to stop doing. But I’ve always taken up that space, I’m used to taking up that space, I want to take up that space, and they are encroaching on my right to do whatever I want, if they say otherwise.”

Fortunately my conscience stepped in at some point to intervene, because my first reaction was harmful, counterproductive, and racist in itself. It was basically saying “As a white person, who racially is pretty much always at the top of a power hierarchy, who is allowed to take up way more space in that area than just about any other kind of person, then I’d rather throw a hissy-fit about my ‘right’ to take up space that belongs to others (and to cause significant harm to them in doing so, even if it just feels like a “little thing” to me), than give up a tiny portion of that space so that other people can take up their own space in the world without fear of certain consequences. And even though it would not harm me at all to just stop doing this, I’m going to act like it does, even though my doing this causes actual tangible harm to other people. Since it has little effect on me, it must have little effect on everyone else.”

The reason I’m going into great detail about it is not to justify it. It’s unjustifiable. It’s because just about everyone has this reaction about something, given that just about everyone has some degree of unfair power in some area. Just about everyone takes up some degree of undeserved space in a way that harms other people and encroaches on their own space. And it seems like an unfortunate fact of human nature to notice when other people do things like this, but to have trouble seeing it in ourselves. This happens in personal relationships, but it also happens in wider contexts involving institutionalized power.

Unfortunately, our society has tended to equate terms like racism with Nazis or KKK members, and therefore people equate it with “calling people a monster”. But it has nothing to do with being a monster. It has to do with being a member of a society that (yes, still) puts some people at an unfair advantage because of the color of their skin, the shape of their body, or the country many of their ancestors come from. And being immersed in that as someone with that advantage is like being a fish in water, you don’t notice it all around you, and you don’t notice when you’re acting on things you ought not to be acting on.

Like the time I explained, politely I thought, to a parent, that describing a developmentally disabled child as not becoming a real adult contributed to widespread harm of disabled people. I explained about the ‘eternal child’ stereotype, and the problems it has caused for many disabled people: Being denied the right to marry, live on our own, have and choose our own sexual relationships, hold jobs, etc. Even being forcibly sterilized. The idea that we don’t become adults has serious consequences, and I pointed out that broadcasting that idea all over the place, even with good intentions, still contributes to the stereotype, and to the harm it causes.

At that point, I was told that the parent in question was only honestly expressing her feelings, which she had a total right to do. In other words, she had a total right to take up that space at the great expense of other people. Her emotions were more important than other people’s uteruses. And if she didn’t intend to contribute to all that negative stuff, then she wasn’t contributing at all to it, right? And I was calling her a monster who didn’t care about people, right?

Well, no. I wasn’t. I even wrote a post trying to explain that I wasn’t making people into good guys and bad guys. And even that I’d been on the other side of this one, I’d been told that it was wrong to say things like this about one of my brothers. Things I’d been taught were okay to say, and never questioned. And that when someone did tell me it was wrong to say it, I listened and I stopped saying it. I pointed out that there are ways to discuss these feelings without condoning them. All the person had to do was explain why, while these were feelings, they weren’t the reality, and treating them as the reality could cause real harm to some people. Or else they could refrain from discussing it altogether.

Both of those are small actions that take very little effort, but both of those were more effort than the person was willing to make. Even though it took far more effort and energy to attack the messenger who told them the harm these ideas could cause. Lots of people popped up to reassure the person that I was just angry and not worth listening to, and didn’t understand or care about the situations parents faced. And I eventually gave it up as pointless.

But that’s a good example of the “You’re saying I’m a monster!” response. It’s also how a weird little twisty thing works, where if you talk about how certain actions dehumanize disabled people, you can be accused of such things as “demonizing parents”, and being full of hate, while all the while the person is actually stirring up hate and against you. That one always turns my mind into a pretzel, but it basically runs that pointing out something is wrong is calling someone a monster and hating them, and that it’s then okay to hate the person who’s supposedly doing that. Or something.

Also, people say that discussing this is just some kind of attempt to make people feel guilty. Well, it isn’t. Sitting around feeling guilty doesn’t help anything. Changing the way you act, does. In fact, changing the way you act is generally both more helpful and less painful than sitting around wallowing in guilt, hostility, or resentment about being made aware of a situation that those most negatively affected by are already well aware of.

But understanding the roots of these attitudes explains a lot of things. It explains why there are a number of people in the world who believe it’s special treatment or unfair advantages when people of color, disabled people, women, or whoever, begin getting even a fraction of what other people get by default. Because it actually requires other people to give up some of the unfair advantage they’ve been immersed in (and taught to view as — at least for them — normal) their entire lives, and that just about everyone but them is painfully aware of. It forces them to stop taking up space that never belonged to them in the first place. And going from having a ton of unfair advantage, to having less of it, feels, to them, like other people gaining unfair advantage.

When I put it like this, my friend related it back to a post she had made on her own blog. It’s called On Flavors of Privilege and it’s well worth reading. It’s about when she found out that her roommate in college initially distrusted her because she was white. And it details a lot of her less-than-productive responses at the time. She’d expected more of “the usual”, which meant, more people telling her she was scary or standoffish. I’ve bolded parts I find especially relevant:

I didn’t get “the usual”. Instead, I got an admission that I made her nervous because I was white.

This completely shocked me. I sputtered something like, “But I’m not racist! Why would you even think that?”

I don’t remember what my roommate said in response, or how that conversation eventually resolved — but nevertheless, things were much better afterward. We actually ended up getting along quite well for the rest of the time we shared a room. Still, though, it wasn’t until several years after graduating that I was able to see the illusory nature of my moral high horse.

She actually decided that her roommate had been the one who was prejudiced, and that she’d “gotten over” that prejudice:

My mistake had been in presuming that my roommate and I were actually on a level playing field to begin with as far as our backgrounds went — meaning that (in my mind, at the time) her reaction had been “paranoid” until she’d gotten a clue, whereas mine had been “reasoned”.

If that wasn’t a privileged assumption on my part, I don’t know what is.

In describing what kinds of advantage she has and hasn’t got — what areas she automatically, water-like, flows into and takes up space in because the space has been taken away from others for her benefit whether she likes it or not:

Sure, I might get looked askance at by some due to my “odd” body language or fleeting eye contact or idiosyncratic, inconsistent use of language — but in general, I don’t have people making cracks within (or outside) earshot about how I and my family are probably “illegals” who ought to be deported.

In general, if I walk into a store, the clerks aren’t looking at my skin color and raising their vigilance levels due to a perception that people who look like me tend to be thieves.

I don’t constantly hear speculations about how people of my ancestral background are probably less intelligent, more aggressive, or less honest — and that somehow “statistics show this, and anyone who doesn’t believe it is just being PC”.

I might hear other speculations, all of them equally misguided, but that doesn’t make the ones that get applied to others and not me “not my problem”!

The part about “not my problem” reminds me of the actions of some parents towards autistic self-advocates, including in the situation I described a little bit further back in this post. Parent-advocates are used to being on the wrong end of certain kinds of discrimination themselves. They are used to being treated by professionals as if they don’t know anything. They are used to fighting back against this idea.

Unfortunately, some parents carry their “fighting back against professionals” mode into their interactions with autistic self-advocates. The advocacy world is heavily parent-dominated, and autistic and other disabled people have had to fight our way in to have a voice at all. But many parents adopt a mentality that says that they are always at the bottom of any hierarchy in this situation. And when autistic people’s views are not the same as the views of these parents, they fight back as if autistic people are oppressing them, as if parents are on the bottom of this hierarchy as well. And that is not true, rather the opposite. (I’m speaking in generalities, and well aware there are autistic people who are also parents.)

Unfortunately, it is very hard to discuss this, even with many parents who view themselves as allies of self-advocates. Because we are supposed to be working together as equals. They mistake pointing out of the inequality here, with creating the inequality. They are unaware of the inequality until someone says something, so that person must have actually caused the inequality, and we would go back to equality if that person would just shut up. (Echoes of “you’re just being too PC”, which is not a valid criticism, merely a blanket dismissal.)

But unfortunately, shutting up just promotes that inequality. Acting like everyone has equal power doesn’t make it so, and can in fact perpetuate inequalities. It’s a good goal, but we’re not there yet.

If I could provide a list of things to be aware of around this stuff, it would be something like this:

1. Just because you can take up certain space, doesn’t mean it’s right. Often it means that other people are prevented in some way from taking it up themselves.

2. People aren’t always right if they are saying something’s wrong with what you’re doing. But it doesn’t mean your defensive reactions, complete with obliviousness to the space you’re taking up, are right, either. And those reactions can cause more harm sometimes, not less. So try to rein them in and really listen.

3. If someone points this out in one area but can’t see it in another, it doesn’t mean they’re a hypocrite and shouldn’t be listened to, but just that they have the standard cognitive biases most people have.

4. Taking up space you don’t deserve doesn’t make you a monster, and doesn’t mean you’re supposed to feel awful or guilty or something. Doing the wrong thing sometimes is human. Everyone abuses power sometimes without realizing it. It’s also still wrong and worth correcting when you’re both aware of and capable of it. This also means it’s not okay to consider someone else a monster just for engaging in this stuff.

5. Often it’s a lot easier — and a better thing to do — just to stop doing something and apologize, than to stir up a big fight about how you’ve got a right to do whatever the heck you want to.

6. Recognizing power inequalities isn’t the same as making pointless euphemisms like “specially challenged”, and therefore doesn’t deserve the label “PC”. Calling these things “PC” is just a way to ignore them.

7. Recognizing these things doesn’t mean you have to be absolutely sure you never do anything remotely wrong and focused on every single last possible detail of yours or anyone else’s actions. It’s just something to be aware of and keep in mind in general. Becoming focused on every little possible detail that could ever come up, is usually counterproductive to that aim.

8. Righting power inequalities isn’t the same as causing them, even if it looks the same to someone who finds the existing ones invisible. Having to pay attention to these things when you never had to before, is not “oppression”.

9. Pretending inequality isn’t there doesn’t make it disappear, any more than the outside world disappears when you’re asleep. This is the big fallacy in things like “colorblindness”.