Tag Archives: Ethics

BADD: Caregiver abuse takes many forms


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:


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.


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.


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.


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.


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.


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.


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.


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.


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.

Mini-feline-ethics post: the power of life and death


I haven’t yet got to my third post about feline ethics, which is going to be about power. But I just found out today that an article I thought was only in a print copy of Mouth Magazine is also published online by Disability Studies Quarterly.

I had gotten the article because someone claimed in response to a feline ethics post, that everyone who loved animals would agree that euthanasia is a good thing. And AnneC pointed out that this is not in fact the case, and that she (as I do) has serious problems with the overuse of euthanasia on cats. And I remembered this article. Unique in breaking the massive taboo against questioning pet euthanasia:

Disability Culture Meets Euthanasia Culture: Lessons From My Cat

The biggest power we have over cats is the power of life and death. Whether or not we swear we would never use it we still have it. It is not a crime to take a cat to the vet and have her killed because she was scratching the furniture, or because she is homeless. We have this power and cats know we have this power. Every animal knows that a bigger, stronger animal is a potential threat to their life. And this is just talking about uses of euthanasia that have nothing at all to do with terminal illness. I won’t go into everything I think, but suffice to say that I think in a better world euthanasia would not be used for trivial reasons ever, and would not be considered the first and best option (rather than, say, treatment and palliative care) the moment a cat is diagnosed with something scary. And there would be better pet insurance than currently exists, and there would be more research into feline pain management (very different from humans), assistive technology, and modifications to the home. And only then should euthanasia even be brought up as an option, if it has to be. We have too much power, we are too frequently persuaded to use it wrongly, and that we use it out of love and guilt doesn’t make the cat any more alive in the end. (And I’m as guilty as anyone else.)

Kowalski and SBWG close their blogs due to cyberbullying.


Blogging Against Disablism Day: An Obituary

A community that tolerates and enables bullies, stalkers, and miscellaneous similar people, is no community at all. Do that and eventually many of the people who are or fear being targeted, will just fade away and hide. And only those of us stubborn enough to remain despite the harassment, defamation, and death threats will be left. Taking part in a community shouldn’t require the level of stubbornness I have learned, or disregard of one’s own safety. I go online every day knowing that my address has been posted on the web along with solicitations of murderers, rape jokes, and just about every possible level of nastiness and invasion of privacy — and my friends, family, and coworkers have been subjected to the same things. I’ve even seen other people first victimized by the same bullies and then told “The bullying will stop as soon as you denounce Amanda/join in the bullying.” I have learned to live with that. But people shouldn’t have to live with that.

There is no excuse for actively enabling bullies. These things are not some kind of “it takes two” situations (flashbacks to being beaten up in elementary school and being told “it takes two”). You don’t see me, Kowalski, SBWG, or most other targets running around harassing, threatening, or stalking anyone (although you can bet that bullies try to make themselves look as if that is happening to them to justify what they do to us). Sure I’ve seen bullies and their enablers bullying each other from time to time, I’ve seen two stalkers stalk each other. But it’s not normally what’s happening. These aren’t personality conflicts. This isn’t about someone just “not liking” someone else. And it’s not like being autistic or otherwise disabled means someone’s innocent — back in my IRC days we had at least two autistic stalkers and at least two autistic child molesters banned from our channel as well as miscellaneous other autistic bullies. (I’ve also heard “But she hasn’t killed you yet so the death threats are harmless.”. Seriously?!??)

This has to stop being acceptable. People have to stop being complacent. Any community that tolerates and enables bullies is practicing de facto exclusion of everyone who is in so much fear of being a target that they leave. That’s why my blog doesn’t allow such crap to go on here. If bullies want a forum they can have it somewhere other than here. (And when autistics.org begins to allow other blogs again that will continue to be our policy.) You shouldn’t have to have the kind of emotional shielding I have learned in order to participate in online discussions. (And yes this is an accessibility issue.) People need to take a stand on this stuff and quit sweeping it under the rug. Otherwise the bullies win every time someone fails to write because they’re afraid. (Although what the bullies are winning always confuses me. I mean they don’t actually gain anything legitimate or useful from what they do. They just get to be incredibly nasty to people. Which is a pointless goal.)

Also, bullying does more than silence people. It also kills. People commit suicide because of bullies all the time. (So all of you well-meaning people who enable bullies? Look at what you’re enabling because it ain’t harmless. And it wouldn’t be harmless even if it “just” caused pain, fear, and suffering either.)

I’ll end by linking to meloukhia’s post: Internet: It’s time to talk. And a warning: neither bullying nor apologist/enabling bullying will be tolerated in comments. So don’t even bother trying.

Edited to add:

Riel of Amorpha came up with a list of good and bad ways to deal with this kind of bullying and put it in comments. I am adding it to the end of this post because it’s important enough I don’t want people to miss it:

Finally came up with some thoughts (after we said in reply to Kowalski’s post we were still thinking about it) about things that we think are helpful and not helpful when a community is trying to deal with online bullies. Much of it gained through bad experience when we tried to deal with them in the wrong way or other people around us did or tried to encourage us to deal with them in the wrong kinds of ways.

What is useful:

  • Supporting the victim of the bullying and affirming that they have the right to be free from bullying.
  • Taking their fear seriously (as opposed to blowing it off with “oh, you shouldn’t care what those people think,” etc).
  • Block known bullies, and people who have agreed to defame others in order to escape bullying themselves, from commenting in any space you can control. Even when their comments are not actually harassing or targeting anyone. Because just seeing their presence can have a chilling effect on others– “okay, maybe they didn’t attack me that time, but what about next time?”
  • Keep others in a community informed about the activities of known stalkers, bullies, etc, if you see them going after new victims, starting new harassment campaigns, etc. Also if you know they’ve been creating new aliases, sockpuppets, posing as others, etc.
  • Find some way to warn newcomers to a community about stalkers and bullies. Especially if you see them gravitating towards bullies because they (new people) haven’t seen their bad side yet, or are confused about who to trust, or are falling for the pseudo-authoritative veneer a lot of bullies have, or think they should “give them a chance,” etc.
  • If harassing/bullying/intimidating comments do get through in any community you have power in (in large communities, for instance, sometimes this can be hard to prevent), make clear, for both the victim(s) and for bystanders, that you will not tolerate this kind of treatment of others.

What is NOT useful:

  • Telling the victim of the bullying to “not care about what other people think.” To a certain extent it’s true that you need to not care what other people think, if you want to express opinions that are currently not accepted by most of society. But when harassment goes past a certain point, and especially when it gets to the point of threats of physical or legal harm, it can’t be reasonably ignored.
  • Telling the victim of the bullying to ignore it because the bully is too “unimportant” to be taken seriously. “Unimportant” people can still become extremely persistent harassers and stalkers. And it doesn’t matter how “unimportant” someone is if they’re genuinely able to convince others of their lies, or incite them to attack or threaten people.
  • Trying to argue/letting other people try to argue with them in comments. This both has a chilling effect on others and floods out any attempts at actually productive discussions. (Several people have already talked about why doing this in the name of “free speech” is a bad idea so I won’t go into it.)
  • Trying to drive them off by being “just as mean as them” or trying to incite “war” between your supporters and theirs. Just… no, this always goes horribly wrong.
  • Trying to find a “middle ground” between yourself and a bully, or between your ideas and theirs. A bully will never accept a middle ground. They will only accept terrorizing and manipulating you into shutting up or repeating their ideas as if you agree with them.

We’ve also seen the thing that AnneC mentioned about bullies (some of whom appeared to be totally the opposite of bullies at first meeting) acting like they are “in the know” about everyone and everything and like they can inform you about all of it, and putting scandalized interpretations on everyone and everything and getting people emotionally riled up for their own purposes.

If only, oh if only


[This is for Blogging Against Disablism Day.]

I knew Adam.

I didn’t know Adam’s mother.

That’s important.

I knew Adam in terms of who he was after he’d already been created. I knew this funny, smart kid who liked to grab my hand and walk in circles with me, who fearfully tried to hide in my room every night when staff came around to tie him to his bed, who looked and sounded very non-standard, and all of these things were just part of Adam. The non-standardness no more and no less than any other part of him.

The only time I heard about Adam’s mother was through those sorts of overheard staff conversations that let you know exactly what you are to them. Through them I heard that no mother should be blamed for “giving up” a child like him, that the unusual but not unpleasant sounds he made were animalistic and unbearable to listen to, and that people like him were, in general, impossible, and should be locked up for the rest of their lives. I heard a lot of pity for his mother. I never once saw her visit — and even the most screwed-up parents usually visited their kids. She had to have at least some money because this was a private institution. But she was never there, and staff made it sound understandable that she would never want to see her child again.

I didn’t know Adam through staff eyes, and I did not know him through parental eyes either. I think this was for the best, all things considered.

And the same has been true of any disabled person I’ve known. Not all of us have been friends. Not all of us have even liked each other. There can be all sorts of negative things in between us like status and power hierarchies, stereotyping, pity, and so forth. But at the same time there’s almost always something missing that I’m glad is missing, and something there that I’m glad is there.

I have never mourned the existence of someone the first time I met them. (Or after that for that matter.)

I have never grieved that someone was not the normal person I expected and hoped for. Not even for a little bit. Not ever.

I have never “had to come to terms with” the fact that someone I knew was born different.

I have never had any urge to commiserate with anyone else over these sorts of things.

I do not look at a person and divide them artificially into the “normal” parts of them that I find tolerable and the “abnormal” parts that I find unbearable and tragic.

I do not look at my friends, compare them to other people their own age, and think how horrible it is that I don’t have the good fortune of experiencing my friends hitting all the ‘typical’ milestones for their age group, there is no sense of loss here.

These ways of thinking are just utterly and beautifully absent.

It’s right that they’re absent. It’s wrong when they’re present. I keep hearing we have to allow for the fact that it’s only natural for people (you know, real people, which I’m not) to grieve this part of our existence. How it’s just wrong, downright insensitive, to want more from people.

Want to know why I and many others I know get nervous about reading blogs by nondisabled parents of disabled people? Even many of the “positive” ones? Stuff like this (paraphrases of stuff I’ve really heard in dozens of variations for each one):

“I go into his room every night while he is sleeping. And he looks so normal. And my heart breaks wondering who he could have been if it weren’t for [insert condition here].”

“It hurts so much every time I see normal children her age. I realize how many milestones she hasn’t hit. How far behind she is. And she may never catch up…”

“Other people will grow and change, but my son will be left behind. Other people become adults, but my son will always be a child.”

“My daughter has to live in a group home because she lacks the skills necessary to live on her own.”

“They said my son would never walk, talk, or take care of himself. And now he’s done all those and more. I am so proud of him.”1

“I overflow with love and pride every time my daughter looks me in the eye, gives me a hug, or uses her words. I would not know how valuable such things are if she didn’t struggle so hard to accomplish them.”

“Life with my son is bittersweet. I love him more than life itself but I know the things he will never do and it makes me sad.”

“I am constantly having to fight to pull my daughter out of her own world and into the real world. If it weren’t for me, she would be lost.”

I could go on, but I won’t. All of these sort of comments seem to be commonplace among nondisabled parent bloggers. When I question them people tell me they can’t help their feelings. But the fact is that without certain disability prejudices, they wouldn’t feel that way. And there are right and wrong ways to write about prejudice-based feelings. The right way puts them in the context of ableism. The wrong way simply serves to reinforce ableism in readers. And for disabled readers who could actually be harmed by the prejudices behind the feelings, the wrong way can feel like the twisting of the knife.

The post I just wrote is actually from an old draft on my computer. It seems that I tried to write this in two different ways. Instead of trying to synthesize them into one post, it seems better to just post them both at once. It’s a little repetitive but I’d rather do this than lose the slightly different meanings that each one has.

Despite appearances not response to any recent discussion. Just coincidence brewing in my head for some time. Also despite appearances not poetry. Just way of handling language at the moment.

I knew you
I didn’t know your mother

I only heard about her
In gossip made by staff
The sort of words they always said
That told us who we were:
They pitied her for having a child like you
And said it was good she put you away
And anyone would do so in her place

I knew you after you were already created
And I knew you roughly the way you were

I did not wonder why you were the way you were
I did not mourn that you were not someone else
I did not have a grieving period when I got to know you
I did not compare you to other children your age and cry that you did not do the same things they did
I did not see you as a special angel or a holy innocent
I did not see you as a normal boy who was stolen and replaced by an empty shell

And that is as it should be
And that is as it should be
And that is as it should be
And that is as it should be

Nobody should experience these things when they meet someone else
Yet people stand around commiserating with each other over all of those things
I walk around on the outside
Knowing I can never be part of that
Hoping they don’t notice the knife-pain that they cause

I know I am supposed to understand
I am supposed to grant that this is all natural
I suppose I can see when the world teaches you to think a certain way
That good people will come up with horrible ideas sometimes
I know I have thought and done horrible things before

But how long do we have to be patient
While the groups of people meet with handkerchiefs in hand
And blow their noses about the existence of people like us?

How long before they too will see
Beneath their shawls of tears and pain
Lies naked bigotry?

How long before the world stops glorifying the parents’ pain
And sees it as a tragedy of prejudice
Instead of a tragedy of disability?
(If there must be tragedy

How long before we don’t have to tiptoe around
How long before we can say
This public exhibitionism of pain and suffering at our existence
Denies our full humanity

How many more disclaimers
How many more do I need to make
To show I am not evil
For pulling back the curtain on evil
Will there ever be enough
Or will this always be
That they’re victimized
By having to face the truth
Of how the way they see us
Affects the ones like you and like me

It interests me that the way you and I related to each other
Is not exceptional when it comes to us
We are those below and those below are seen as
Sticking with our own kind

It is exceptional for one of those above to like us
To not mourn for our existence
This is praised as if it’s an achievement
It is just the way things should be

When you and I liked each other
Nobody praised us
If they took the time to notice at all
They either seemed indifferent
Or tried to split us apart

Not all of us liked each other
We had our own hierarchies
And prejudices
We were not some utopia
We are just as much a part of the world
As anyone else
And some of what happened was ugly

But we still saw each other
In a way the others didn’t see us:
We saw each other as we were
Not as we could have been
The sense of tragedy was entirely absent

One day I want to walk up to a nondisabled person
Wipe the tears from my eyes and say
“How tragic — you could have been disabled
And yet” (sniffle) “you had to turn out normal” (wail)
“Oh well. There’s always hope of a cure.”

What? You don’t see each other that way?
You don’t wonder (constantly) what might have been
If only, oh if only you were disabled?

It’s very simple:
Through our own minds
We are not lost and diminished
We are not those who would otherwise have been complete
We are real and whole
Because we are

1 If the inclusion of this line seems offensive, please read the third comment on this post. I included it because the constant recitation of this line can be part of an overall pattern, that came up in a discussion between me, a nonspeaking boy, and his mother. If you use it outside of that overall pattern, I’m not talking about you. But the fact that the line is repeated to the point of cliche does mean something, and it’s not always something innocent. I also don’t mean in any context that it’s wrong to teach or learn those skills. But it can sometimes be part of a distancing, fear, and even hostility towards people who for whatever reason don’t have those skills, a sense of “If she had turned out like you, it would have been awful.” Again, if you truly don’t have that fear, I don’t mean you.

Feline Ethics, Part 2: Avoiding Arrogance


This is the second in an ongoing series of posts about feline-human ethics. The first post is Dealing with cats, part 1: What is Respect? The current post is on the topic of avoiding arrogance. The post that’s currently planned as the next post will be about the power humans hold over cats.

Human arrogance towards cats frequently goes two apparently opposiite directions.

1. Cats are like miniature humans in every way. They understand every word of what we say, are motivated by exactly the things that motivate us, and if they don’t respond exactly how we expect another human to respond then they are just being stubborn, callous, cruel, manipulative, etc. Any attempt to say otherwise relegates cats to the realm of dumb animals.

2. Cats are totally unlike and inferior to humans. They do not understand a single word of what we say, cannot love, cannot reason, are not self-aware, etc. They see us as food sources and nothing more. Any claim otherwise needs to be rigorously proven in a laboratory setting, and is probably a misunderstanding of basic instinctual behavior.

The first approach is arrogant because it comes from a tendency to view the world, and especially cats, as a reflection of humanity. So it views respecting cats and seeing them as human as if these two things are synonymous. The second approach is arrogant because it views certain traits as exclusive to humans (or at least to “advanced” animals). It also, like many false ideas about cognitive disability in humans, views it as “scientific” to start from the assumption that cats lack certain abilities and demands absolute proof of the presence of those abilities before it will believe in them. Whereas for “normal” humans the preesumption is that we have those abilities.

From my standpoint those views are two sides of the same coin. The idea they both stem from is that humans are superior in certain ways. It’s just that one solves the problem of respecting cats by giving them traits identical to humans, and the other just doesn’t bother respecting cats and assumes that only humans have traits that are common among many species, cats included.

Often someone who holds one of these beliefs will assume that the other belief is the only other one possible, so that if you doubt one you must believe the other. If you doubt the first one someone will think you believe cats are nothing like humans and are overly wedded to the biases of many scientists, and if you doubt the second one someone will believe you’re engaging in overly sentimental anthropomorphism.

When most people think about cats, they see them as having a life that is simpler than our own. A little life that can be contained inside the bigger concepts that humans have. Emotions are like ours but fewer of them, thoughts are like ours but less complicated and not as many, and so forth.

This is not a useful way to look at the lives of cats. They are not miniature humans, and they are certainly not like humans but with certain aspects blunted, removed, and simplified. They are cats. They have their own complex way of relating to the world and each other. They have their own emotions which they feel according to their own values. They have things in common with us, but it’s dangerous to assume either identicalness or that they are just limited versions of us.

So when you think of cats, have some humility. Understand that there are more aspects to their way of doing things than humans can even perceive, let alone understand. This doesn’t make cats innately mysterious, it just means that we are working with different bodies, sensory organs, and brains. Even humans with the best sense of smell have nothing on cats. Our visual system is set up totally differently, not only can we not see in low light levels but our perception of motion is nothing like a cat’s. These are not little differences, they shape cats and humans into very different beings. As humans trying to understand cats, there are just flat out things we will only comprehend the vague shape of, and others we will never guess.

Be excited over these differences rather than trying to think of cats as inferior or even simpler beings. This is not to diminish what we have in common either, just an attempt to avoid making them into lesser beings just because they are different ones.

It is also important not to think of yourself as a Cat Expert. If all the stories you tell others or yourself contain phrases like “good with cats”, “a way with animals”, etc., then you are headed in the wrong direction entirely. You may have an affinity with cats — I have always found them easier to relate to than humans — but the moment your self-image depends on being right about all matters cattish, you are doing the cats a grave disservice. Because once you enter that frame of mind, you will begin to delude yourself and forget that you can make mistakes. The moment you forget that you can make mistakes, you are able to do great harm to the people you base your ego on understanding. And ‘people’ there includes cats.

Whenever someone meets Fey and begins by saying they are ‘good with cats’ or similar, I try to convey enough watchful alarm in my body language for Fey to pick up on it and get on the alert herself. (Such people never notice this body language in either one of us.) Some things I have seen such people do:

1. Grab her and find a way to hold her where she knows she can’t fight. At that point she gives up (but looks terribly uncomfortable) and they tell me, “See she likes being held after all if someone who is good with cats does it”.

(I have even seen mention of that one in a better than average book about cats. But most cat books don’t mention it or other ethical issues at all, except sometimes to reassure humans that whatever decisions they make for cats are the right ones.)

2. Try to do whatever I just told them not to do. If they succeed in doing it without provoking a major response, they assume she is okay. If they do provoke a major response (hissing, spitting, tail lashing, ears back, clawing for instance) they go “awwww what a cute playful little kitty cat” and make me want to go at them with my claws out.

For example, Fey has some kind of condition affecting a particular nerve going to her back right leg. The vet said she had never seen a cat so thoroughly indicate that the problem is a particular nerve and not others. I tend to tell people to avoid her entire back end. On good days she will initiate touch in that area, on mediocre days she will allow touch but stiffen and look uncomfortable, and on bad days she will indicate pain in every possible way and defend herself by any means necessary.

Some really egotistical people will, upon explanation of this, proceed to grab her by the exact body part that hurts in order to try and prove they are Special People Gifted With Animals who can touch her there without provoking a response. And even if she responds by mauling them, they Dont Get It. At all. No matter what happens, they especially don’t get that causing another living being intense physical pain on purpose to prove that they are a special good kind of human only proves that they are an especially terrible, insensitive, and cruel kind of human who ought not to be allowed within a mile of a cat.

(I have also seen these sorts of people at the animal shelter. Fortunately they get thrown out pretty quickly because, among other things, if an animal scratched someone they have to be put in isolation for a long time which is horrible for the animal and everyone wants to prevent it. And because the people who work there actually care about animals.)

3. Read all sorts of bizarre and obviously false things into her behavior because they just can’t possibly handle the idea of not knowing what some action on Fey’s part means. Which in turn leads to really pissing her off eventually.

4. Use their “knowledge” about her as an ego trip or power play with me or other people.

5. Do any or all of these things to me as well, because lots of people who view themselves as Good With Cats also view themselves as Good With Autistics (or sometimes Good With Nonspeaking People). And they especially love to do it in situations where I can’t do anything about it. Such as get me in a situation where I can’t respond well and then harangue someone for ‘upsetting me’ or something when nothing of the sort has even happened.

Viewing yourself as Good With an entire category of people opens you up to massively egotistical mistakes that lead you down the road to outright physical and emotional abuse. It doesn’t matter if everyone around you comments on your gift with cats, your way with cats, your being a cat whisperer, whatever. I ignore such comments if I get them. I have a close relationship with a cat. Not special powers. You should never ever let praise go to your head. No matter who you are, your ability to make grievous mistakes when trying to understand another species is an absolute given. Until you understand this, avoid cats.

And if you have either thought “This part of the post doesn’t apply with me because I am too good with cats to make serious mistakes,” or if you respond to other cat lovers admitting to serious mistakes by either thinking or uttering “I am so good with cats that I could never make that level of mistake”? That goes double for you. I have a deep and rewarding and loving two-way connection to Fey that is more detailed in our understanding of each other than any other relationship, human or cat, that I have ever had. And we both make mistakes and have misunderstandings every single day. If you think that doesn’t happen you are fooling yourself and setting yourself up to harm the cat.

The other direction arrogance can go is in assuming there is no actual harm in making massive mistakes because it’s just a cat. Or worse, that because the cat can’t tell anyone what you do, it is really okay. I have only ever got one person to admit that last one. But as someone whose ability to communicate in standard ways can come and go, I have watched what I thought were decent people transform into assholes many times the moment they thought I was either unaware or unable to tell anyone what they had done. And if it was bad for me it would be worse for cats.

I don’t really know what to say to all that. I know people who think if someone purportedly can’t understand what’s happening then cruelty isn’t wrong. I know some peopleonly care about being caught doing wrong, not about doing wrong itself, because such people have done awful things to me when I either couldn’t tell anyone or wouldn’t be believed if I did. But I know that each time people play out such attitudes on cats, the cats suffer.

Cats also suffer when treated like humans in cat suits. They end up being punished in ways that feel like a random attack from nowhere for no reason. People do things that are polite to humans but terribly rude to cats. And cats also suffer when people assume that things like love are too human for cats to fathom. Working across species is even harder than working across cultures in many respects, it’s hard to know what’s exclusively human and what we share with other animals. And there are things we may never know.

The best way to approach learning about cats is with a combination of respect and humility. Know that you’re going to mess up, but don’t focus on it so hard that you don’t even try. Be alert to signals that the cat doesn’t like what you’re doing, and don’t laugh them off with “awwww aren’t we feisty today”. Treat the cat as an individual and conscious being that you are getting to know, not as a human or a mindless automaton. Keep your ego out of the way. And above all, be aware that despite differences in species, you are dealing with someone (not something) who is capable of feeling love, physical and emotional pain, anger, joy, fear, and many other things. Treat them accordingly.

Fey on my bed

The photograph is of Fey, a grey cat with ticked fur and some white markings. She is lying curled up on a foam mattress on top of a hospital bed tilted slightly upward. Her face is at the top, in profile. You can see the dome of her eye, with a large black pupil underneath, her eyebrow whiskers pointed straight up, and a big triangular ear pointed directly at the camera. The focus becomes fuzzy towards her tail, which is curled up and around. You can also see the shiny bedrail with some notebooks behind it. The mattress she is laying on is yellow memory foam with a pale green bedsheet part on and part off it. The foam is roughly the same shade of yellow as her eye.

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.

Dealing with Cats, Part 1: What is respect?


Disclaimer: I am not an animal rights activist, I have zero connection to that movement and their personal sets of widgets, and often only minimal exposure to them through some of their worst representatives (PETA, Peter Singer).

I think the argument about whether animals (including humans) have a nebulous and abstract quality called “personhood” (which seems to have to do with the values of a particular set of human cultures) is the entirely wrong way to go about giving respect to animals. Too often it is terribly ableist and depends upon whether the creature in question possesses certain traits valued by certain humans, and when you go down that road you end up creating a set of criteria that not even all humans let alone all the rest of animals meet. Then you end up creating a system that privileges people based on those traits. And Singer is only among the worst of human beings to do this, he is far from the only one. In fact most people I encounter regularly seem to do this sort of thing all the time, to one degree or another. Arguments about “sentience” are similarly doomed, offensive, and full of the obvious limitations of various human imaginations when it comes to non-humans and some humans. Except that somehow they’re given even more of an outer sense of objectiveness because “sentience” seems to mostly be used in scientific or science-fiction circles.

[Edited to add: I have been told that some of that may matter in legal situations. But this series of cat posts is about personal situations between humans and cats. So in this context, cats should be respected because they exist.]

I base my beliefs in matters like this on respect.

I believe that everything, human or not, animal or not, conventionally considered alive at all or not, is worthy of respect.

I do not believe this in some fluffy insubstantial manner; fluffy sorts of people have been attracted to me in the past because the words I use superficially resemble words they sometimes use, but as soon as they find out a bit of what I am actually about they have a habit of running away rapidly. It is serious to me, solid, and ethically demanding. I also happen to believe that everything communicates and can be communicated with. I do not mean sitting around speaking out loud to rocks and having them speak out loud back. I mean that everything conveys information to everything else, whether or not that information is transmitted through the laws of physics or through complex linguistic patterns.

This is a perception that I have had my entire life and that has often been at odds with my culture. But I can’t let go of it just because some people have done terrible (and I do mean terrible) things to me on this basis (although at times I have learned to avoid the subject altogether). It is too important to how I treat others, from humans to cats to plants to rocks. I am not (as some have misinterpreted me) attributing human traits to nonhumans, I am rather saying that I view every kind of thing from humans to nonhumans as having a quality entirely their own that is important and valuable and worthy of respect and sincere attempts to listen to what they have to say to the world around them.

(I also don’t divide the world up the same way the English language forces me to sound like, but I have learned that very few other humans can speak the language I started out with and have always carried with me underneath the various attempts to sound as if I speak English. I have also found that attempts to translate my language to English not only fall short but cause reactions in others from ridicule to condemnation as incredibly inadequate in some manner whether moral or functional. And that linguists get pissed that I use the term language at all but I don’t know a better one.)

How do I know this language or whatever you call it is shared by other people? For one thing, I see it mentioned from time to time:

Momo listened to everyone and everything, to dogs and cats, crickets and tortoises — even to the rain and the wind in the pine trees — and all of them spoke to her after their own fashion.

Many were the evenings when, after her friends had gone home, she would sit by herself in the middle of the old stone amphitheater, with the sky’s starry vault overhead, and simply listen to the great silence around her.

Whenever she did this, she felt she was sitting at the center of a giant ear, listening to the world of the stars, and she seemed to hear soft but majestic music that touched her heart in the strangest way. On nights like these, she always had the most beautiful dreams.

Those who still think listening isn’t an art should see if they can do half as well.

–Michael Ende, Momo

Or the following quote (somewhat autistic-centric and specific-culture-centric, so occasionally prone to generalizations):

MM: [Speaking of some autistic people…] we do not draw a line between inanimate and animate beings, that they all have a soul to us.

Daina: As a child, everything was somewhat alive to me. Perhaps the face-processing tendency that most NTs have enables them early on to distinguish what is alive and what isn’t, and what is human and what isn’t.

Ava: Or maybe what is and isn’t alive, is just another assumption that NTs make. So for the NT child, either because of the strength of those attachments to faces and the accompanying social world, or through some coincidental developmental process, the aliveness of the sensory world fades. Whereas we ACs retain more of the direct experience of the world and less of the face-addiction-belief thing.

Sola: This reminds me of a poem that I studied in high school, “The Pond” by Bjalik. The poem describes a secret place in the forest, where there is a little pond and a tree growing from it. When the poet was a little boy, he used to go there, alone, and listen to the “language of visions,” an unmediated way for the child to communicate with the tree and the pond. The articles that I read about this poem discussed the role of spoken language, as adding the social aspect, separating the initially naive child from the true essence of the world. I was enchanted by the poem. For many months I perseverated on the meaning of communication and language, searching the library for more articles about this. However, unlike the conclusion of the poem, I did not feel that growing up and maturing inevitably meant losing this innocence and being expelled from nature. I felt that I was still that child in the forest. Now that I know that I am AS, I am not surprised that the poem had such influence on me.


MM: We are always sewing souls into the things we create.

Jane: Yes I think soul (essence of being) is created through the creation of a relationship. I call it a moral relationship (which I know sounds prissy or sanctimonious to some), by which I mean a relationship where there is acceptance/acknowledgement of agency and responsibility. When I relate to an object (whether it is another human or a bear I have created out of cloth), with my moral/aware consciousness, when I acknowledge my power to affect (recognize, hurt, heal, shine like the sun or nourish like rain — even to destroy like lightning), I also give power to the other (the object) to affect me. So that other is as alive as I am (in this sense). We are in a moral relationship that gives life meaning. That is why I know the bears who are my most intimate and daily family do help me be/have whatever is good in who I am and what I do. It is the relationship that makes us who we are (that makes me who I am). And I say that even though I have a strong tendency to want to say/feel I am I, alone. That fraction of truth lives inside the larger truth of relationships.

MM: Most of humanity is ignorant for not seeing what is around them. I hear the rocks and trees. Wish me well and tell me I am one of them, one of the silent ones who has now been given a voice, and that I must come out of hiding to protect others without voices: in my case I tend to help give voice to persons with Alzheimer’s disease. My washer and dryer speak to me, and I painted a face on them and gave them names and make sure I don’t overwork them. When I worked in a copy shop I could produce more copies than any other employee. Yes, I could understand the physics of the machines and their limitations from overheating etc. But for me the machines were talking to me and I talked back regularly.

I was raised by my Siamese cat I could understand her language better than the human language, and so I spoke Siamese before I spoke English, and I thought the cat was my real mother because I could understand her more than I could understand humans. I speak to children, babies, machines, rocks and trees as if they can hear me and they know what I am talking about. That is why my success with Alzheimer’s patients is so high: I treat them with such great respect and assume they know what I am saying. And I wonder why the rest of the world is so ignorant as to treat others as stupid and dumb and things and animals so terribly because they are somehow less than us? Well I think that this is a very arrogant stance to think we are better or more alive than these others who very much have a soul.

The last set of quotes is from a set of conversations between several autistic women in the book Women from Another Planet edited by Jean Kearns Miller. It’s not identical to my experience, but the basic idea many of them are getting at is quite similar to my own idea of my innate “language”. These are not the only autistic people I have heard say this either, just the ones readily accessible in a book. Whatever way I innately perceive the world around me in this sense has a lot in common with a specific subgroup of other people, many of whom have been defined by others as autistic but not exclusively that. And I am always glad to hear something of autistic people that isn’t the stereotype of either having an empty head or a head filled exclusively with elaborate formal logic like Spock.

So how does all this apply to cats? Well, in my book cats are as deserving of a fundamental respect as are humans, rocks, and all kinds of other things whether traditionally considered animate or inanimate. Like all forms of respect, this doesn’t mean treating all cats identically to all humans (that would be a frightfully human-centered way of doing things), or even treating all cats or all humans the same as each other. Respect has to do with really listening to who someone is and treating them accordingly, even if that differs from how you would treat someone else with respect. Identical and equal are not the same. It is as wrong to reach out and pet all over a cat who finds indiscriminate petting unpleasant, as it is to withhold petting from a cat who thrives on it (but in both cases it’s also wrong to approach the cat in a way that has everything to do with your own preferences and nothing at all to do with the cat’s!). Respect doesn’t mean you don’t have to work to understand the cat either, but that is a topic for a later post in this series.

This post is the first in a series of posts I am planning to write about how to deal with and interact with cats. It’s an attempt to give a broad overview of where I am coming from before I jump into all the details. And my reason for writing this is my reason for writing most things: I rarely see anything written about the subject matter from this perspective, I know I can’t be unique in valuing this perspective (because no one is that unique no matter what they believe), and so I write the kind of thing I would like to see written. And because a friend and I have been discussing nothing but cats for ages, so my brain is pointed in this direction.


[Photo is Fey, viewed from over the top of both of our heads. Her face is pointing the opposite direction of mine, and mine is barely visible in the photo. Her cheek is partly on my cheek and partly on the grey neck pillow. She is a grey cat with ticked fur, and a white area on her nose like a diamond on top of a triangle of white. There is also some white visible on the tiny part of her chest that you can see. She has green eyes, each one partially shut but with one more so than the other. Her ears are in their normal relaxed position. Her whiskers are neither pulled in nor pushed out, and can only be seen on one side where they spray upwards (her face is pointing to the left side of the photo). And to me, the way her face looks in this photo is both intense and familiar, although I don’t know how they would look to anyone else.]

To be finally free from entanglement.


It has been a long time, longer than probably anyone but my closest friends could guess, since I have felt comfortable being on the Autism Hub.

It was okay at first. It seemed to be similar to a blogring (anyone remember webrings?), a place where links to various blogs were collected by someone I barely knew who happened to like those blogs a lot. But then it became a community.

Online communities can be good things, but they’re complicated. They seem to sprout cliques (which start out innocently as groups of friends then harden their walls when conflict occurs), feuds, and drama faster than my head sprouts hair. Often faster than I even notice their existence. And then things get even more complicated. People have arguments that mysteriously seem to line up with the same sets of people on each side most times no matter the topic. Other people start insisting that since we’re all in the same community, we’re all really on the same side — since we supposedly all want the best for autistic people (even if it’s clear we don’t all, and even when people have totally opposite ideas of what “the best” is). Communities of this sort often come with massive strings attached.

I do want to make a few things clear though: I have friends in this community. I have people I agree with in this community. (Those two groups are [gasp] not identical! Would that more people understood that.) I have people I respect greatly in this community. I don’t respect them any less for remaining there when I leave, that’s a personal choice everyone has to make for themselves.

I am leaving the Hub (whenever Dave gets my email or reads this) but not leaving for want of those things.

I am also not leaving because I have changed my views on autism or disability. I am leaving in part because of those long-held views. Not leaving because of any recent events, in fact I have remained oblivious to most events recently due to lack of time and energy (if had more energy would left sooner). Certainly not leaving because of any one event or person.

Why am I leaving then? Half of it has to do with the complications of this kind of community and a desire not to become entangled in the strings attached. And half of it has to do with the long nagging of my conscience and ethics.

Review of something often point out: I am not primarily an autism blogger or a neurodiversity blogger, not in my mind anyway. I am a person who operates from various (not widgeted so there is no good name for them, this not being a putdown for widget-users but my inability to do more than rudimentary widget-work) ethical principles and applies those throughout my life, some of which involves blogging about events in my life and the world around me, from that particular point of view.

I usually deal with disability rights topics. I have noticed that people with cerebral palsy who blog from disability rights standpoint about events affecting them and other people with CP are not called “CP bloggers” at anywhere near the rate that autistic people doing the same get called “autism bloggers” (in fact when I google “CP bloggers” I find mostly stuff about Club Penguin, whatever that is). On the other hand, I can make an entire video dedicated to a girl with CP trying to say the way she and I (and many sorts of disabled people, and nondisabled people who happen to come from nondominant cultures, etc.) have been dehumanized on the basis of our way of communicating and interacting with the world, is incredibly wrong. And end up on television represented as if the film is about letting people into “my world” of autism (which is something Sue Rubin said about her film but I never said about mine, in fact voiced strong objections to that whole idea). [headdesk]

So to me, I am primarily an ethical blogger, or a political blogger, depending on your definition of political. Possibly even a disability rights blogger even though that’s still not the entirety of my point. Not primarily an autism blogger. So while I do happen to want the best for autistic people that is too narrow to be considered central to my reason for blogging or my de facto membership in a community that used to just be a blogring at the time I joined it. And I guarantee that my idea of what’s best for us is totally different than a lot of what I have seen on the Hub.

I have seen ableism running rampant all over this community. I have seen those who try to counter this ableism, be they blunt or diplomatic, treated as if just making trouble or being mean. Although the blunt ones are treated worse, in yet another stunning display of ableism (gee, autistics, blunt? Who would figure?).

I have seen vile hate speech be more readily allowed on parts of the Hub than the non-hateful speech of autistics (and even some allies) who simply disagree with people in those parts.

I have seen all manner of pseudo-allies as well as fair weather allies who retreat into their privilege and leave autistics hanging when the going gets tough.

I have seen people who are on the Hub for primarily scientific reasons whose ideas about actual autistic people range from inaccurate to degrading and patronizing. I have seen parents do the same. I have seen autistics get treated terribly for pointing this out. The old power structures — professional over parent, parent over autistic (recognizing that this is simplified because any one can also be any of the others) — still hold strong on parts of the Hub.

I have seen a lot of medical model ideas floating around. I have seen people treating the education of autistic people as if it is therapy. Even people promoting so-called treatments of autistic people, that are identical to ones some of the autistic Hub bloggers were harmed by as kids, but if we say something we are either ignored or patronized and treated like we just don’t understand.

I have seen “biomed” become the latest in a long series of different “bad guys” who are supposedly the opposite of “the neurodiverse”. Even though there are “biomed” parents who do a better job of understanding and fighting the societal forces that make the world such a nasty place to be autistic, than some Hub parents who seem to all but embrace those forces.

(I know some biomed stuff is terribly dangerous and needs opposing. But on the Hub it’s turned into good guys and bad guys and I don’t believe in good guys and bad guys. The world is more complicated than it looks in this community sometimes. I don’t like being in close proximity to these distortions.)

And for that matter the whole cure topic gets oversimplified the same way. While I strongly disagree with the notion of cure and all it represents, not all decent people have even heard of my point of view and not all decent people would agree with me once they did. I have worked right alongside people who want cures (some of whom even did “biomed”), in order to fight for good adult services, against restraints and seclusion, against institutions in all their forms from huge to tiny and stereotypical to stealth, and a lot of other issues that we can agree on. And I have met anti-cure people who are aspie supremacists, who do great harm to autistic people (especially those they perceive as inferior), and who I would rarely if ever find anything to agree with them on, not even the reasons for opposing cure.

And I have seen a lot of personal fighting that may once have had a point but now seems to just go endlessly in circles. If I am going to fight for something, I want it to be something that at least makes progress in a useful direction. Comes from not having much energy to spare.

I am not interested in going into who did what. I don’t even care who does these things, I just care that they are being done. I won’t answer or print any comments going “Is it me?” or “It is me and you are attacking me.” Or anything similar. That is just point-distraction.

I still have limited time can spend on the Internet and limited time can read and write on blogs. Have found that I no longer even wish to allow the pretence that I am part of this community. General-sense disabled and autistic communities, maybe, this particular little community, no.

Again, my viewpoints haven’t changed, my friendships haven’t changed, my people respect (including some I have criticized) hasn’t changed, and I don’t even think would necessarily be a good thing if the Hub didn’t exist. I just had to get out, for reasons that are entirely my own.

I know this decision is the right one because it feels like freedom rather than entanglement. It feels like being able to think again. It feels like breathing after long suffocation.

Or as Anne put it in her blog post about cutting her ties with the transhumanist subculture:

And I don’t have any problem being friends with someone who still calls xyrself a transhumanist, or engaging in respectful discussion with such a person. With very few exceptions (e.g., Nazis, Raelians, Amway salespeople), I don’t care a lick what someone’s associations are — I am very much about taking people on their own terms, probably to a fault.


I’ve just realized that I don’t owe anyone anything for having the interests I have, nor do I need to be a “member” of any transhumanist organization in order to have the kinds of interesting discussions that I’ve always been interested in having.

If that’s somehow not okay with you — well personally I don’t care, but you might want to seriously examine your thinking. I can’t survive cognitively in environments that force everything into false dichotomies, and nobody should feel hurt, slighted, or bitter because of my doing what I need to do for the sake of being able to actually use my brain.

And that says it all.

Michelle Dawson won her human rights case.


Here is Michelle’s blog entry about it.

Here is the HTML copy of the decision.

Here is the PDF copy of the decision.

I will quote a similar part to the part Michelle quoted:

[242] Be this as it may, the Tribunal finds it disturbing for the future of autistic people that they be seen because of their condition to pose a threat to the safety of others and some form of nuisance in the workplace. An employer has a duty to ensure not only that all employees work in a safe environment but also that ill perceptions about an employee’s condition due to poor or inadequate information about his disability lead other employees to have negative and ill-founded perceptions about him.

[243] An autistic person should expect that his workplace be free of any misperception or misconception about his condition. It goes to the right of autistic individuals to be treated equally, with dignity and respect, free of any discrimination or harassment related to their condition. In this respect, in a society where human rights are paramount, an employer has the duty to dispel such misconception or misperception about such individuals.

[244] This duty stems from the Canadian Human Rights Act and the need to get rid of any discriminatory behavior in the workplace as well as in society in general. It is worth reminding employers as well as society as a whole that the purpose of the Canadian Human Rights Act, as stated in section 2 of the Act, is to give effect to the principle that all individuals should have an opportunity equal with other individuals to make for themselves the lives that they are able and wish to have and to have their needs accommodated, consistent with their duties and obligations as members of society, without being hindered in or prevented from doing so by discriminatory practices based on race, national or ethnic origin, colour, religion, age, sex, sexual orientation, marital status, family status, disability or conviction for an offence for which a pardon has been granted.

[245] Autistic people, if they want to be able to accomplish themselves in a workplace or in society, need to be reassured that everything possible short of undue hardship will be done in order to ensure that misperceptions and misconceptions about their condition are properly handled by their employer, so that co-workers have a proper understanding of their condition and are not inclined to discriminate against them or harass them.

[246] To discriminate on the basis of somebody’s physical appearance or social behavior might be one of the cruelest forms of discrimination. Here, Ms. Dawson was seen or perceived, at one point in her career at Canada Post, to be a threat to her co-workers because she had self-injured in the past, not because she had assaulted colleagues. She was later on perceived as a form of nuisance because she insisted on obtaining rational responses to her queries and never backed down. The fact of the matter is that Ms. Dawson was, until her diagnosis became officially known to Canada Post in 1999, seen as an excellent employee.

[247] The Tribunal is of the opinion, in view of the evidence, that the Respondent needs to review its policies in relation to discrimination and harassment and put in place educational programs that will sensitize its employees as well as management to the needs of disabled individuals in the workplace, notably autistic individuals, so that individuals such as Ms. Dawson will not have to suffer from a lack of knowledge and understanding of their condition. In this respect, given the Canadian Human Rights Commission’s expertise in these matters, the latter can surely provide assistance, which should be welcomed, to the Respondent.

Congratulations, Michelle. This decision ought to make things not only better for you, but for all autistic Canadians who might be in your position.

My only concern is that I hope that other autistic people will be taken as seriously as Michelle was, if they are not able to maintain the standard of perfection in employment that she did for a long time. She had, until very near the end, never taken a sick day, and never complained.

I do not know precisely why that was, in her case. But I do know that in general, disabled people, like many other people viewed with suspicion by those with more power in a society, have to work harder than everyone else, and hold ourselves to a higher standard than everyone else, in order to be considered anything close to equal.

This means that for many of us, me included, we learn that even in the event that we are capable of communicating about health problems, then we should not do so. This often leads to the eventual collapse of our health when things that could possibly have been caught and treated early, are left to get to emergency levels. In the worst cases, it leads to our deaths. Living in constant physical pain has negative effects on the body, but many of us do exactly that rather than risk being perceived as slacking or incapable.

In the book Real Eyes by Ruth Ryan and Dave Hingsburger, I read about a woman who was referred to Ruth Ryan, a psychiatrist, for “hysterical” abdominal pain after she collapsed trying to get to work one morning. Turned out she had not only one but two conditions causing it, and either of them alone would have made most non-disabled people not even attempt to get out of bed, let alone to work.

Something’s wrong when that happens, but it’s a constant theme in the lives of nearly every disabled person I know, as well as non-disabled people working or living in settings where people like them have historically been frowned upon. Let people see weakness and you’re frequently perceived and treated as either incompetent (and an example of how incompetent everyone like you is) or lazy (and an example of how lazy everyone like you us). So we learn that even when it is possible for us to do something about these things, we should do so in total privacy if at all.

That can be a necessary survival tactic in some contexts, and it can give us added credibility once something goes so wrong that we can’t hide it. But it shouldn’t have to be. As I said, I don’t know Michelle’s specific reasons for her excellent work record, it could just be a result of her personality. But I hope that, had Michelle needed sick days, and had she needed more extensive barriers removed for her in the workplace from the start, that the Human Rights Tribunal would have decided in her favor anyway. And I hope that in the event an autistic person in the future needs drastic modifications to the job from the beginning, or has to take time off periodically, and in the event that something happens to them that is as awful as what happened to her, then they will be treated far more fairly than what Michelle Dawson had to go through to get to this point.

I hope that is the direction that this victory leads Canada in, and I hope that people in other countries take note as well.