Tag Archives: privilege

“I don’t know that person’s program.”

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That's a sentence I've heard a lot. And when they don't say exactly that, they say things that mean the same thing. Usually in the developmental disability system, for some reason, although I can easily imagine it in other contexts.

What it really means:

“DD people aren't like regular people. When people do things to them that would be horrible if they happened to other people, there's always a logical reason that justifies whatever is happening. Staff and case managers rarely if ever abuse power. All of their decisions have the best interests of clients at heart. So if something looks terrible, chances are that there's a reasonable explanation behind it. I just don't know what that explanation is. And I likely never will, so I'm not going to judge.”

They say this when staff scream at an old woman with an unsteady gait every time she falls, and refuse to help her get back up or allow her to hold onto things for balance.

They say this when staff publicly humiliate a man who clearly has trouble moving to avoid obstacles, when he accidentally bumps into someone.

They say this when staff do their best to keep a boyfriend and girlfriend apart. Or when staff are okay with boyfriend and girlfriend, but balk at the idea that two women with intellectual disabilities have fallen in love. As if it's even their job to decide who can love who.

They say this when parents simultaneously put on a big public show of wishing their son could move out on his own like he wants to, but sabotage his every attempt to do so. Because they had planned out a whole life for him in the group home they run, and can't handle the idea that he doesn't want to live under their control the rest of his life.

They say this when a staff person kisses a grown man's leg and says “I kiss you boo boo aww betta!” in baby talk.

They say this when, in the name of integration, staff prohibit disabled people from speaking or socializing with each other. I just saw an instance of that last one, which is why I finally remembered to write a post on the matter.

They say this when we get outright tortured. Tied down. Skin shocked. Slapped. Pinched. Made to smell ammonia.

I wish I could upload the scenes from real life that play out vividly in my head. But like as not, people likely to say these things wouldn't consider me a reliable observer. They never do, when you start pointing out the truth. When you see yourselves as people. With all that this means.

Suddenly you are either too severely disabled to understand what's happening, or you're not disabled enough to grasp why treating people like dirt is necessary. Or both at once. And they'd much rather you were highly submissive, maybe even the really cool type of client who helps staff out by giving them information about other clients.

All of this requires seeing DD people as less than. It just has to. There is no other way to justify these actions towards us.

And I know how people see us. As in, I know what we look like inside their minds. Sometimes we're human — almost, anyway. Not quite. There's something vitally important inside every real human. And to them, we either don't have it, or are missing large chunks of it. So we go around in human bodies but there's pieces missing in our minds and our souls. Even people who don't believe in souls in any religious sense, still perceive something inside us as only partial.

I know this because this is one of those viewpoints that isn't content to stay in the minds of others. It tries to force its way as deeply into us as it can manage. Until many of us look in the mirror and see only part of a person.

I can't describe the violence that involves. It's horrible. And a whole system of relating to us, forces its way into our lives. It tells us that we are taken care of, that we can relax, go to sleep, almost. And then it suffocates from inside. There's no words for it.

I suspect the drive to say this about people comes from several places at once.

If you work in the system, there's not wanting to see yourself or your coworkers or people who could be you, doing something horribly wrong. Much less on a regular basis.

I also suspect a strong desire to trust the society they live in, not to do horrible things to people. Or at least, not to do horrible things to certain kinds of people.

A member of my family once told me that it took him a long time to believe what happened to me in mental institutions. He said that in order to come to terms with the reality of the abuse, he had to destroy a strong desire to believe that the society he lived in was safe and just. Him telling me that was far more honest than a lot of people are.

That desire to trust society gets in the way of understanding every kind of injustice. I am amazed that people trust a society that does its best to shut out and destroy all but a handful of people. But they do.

And not seeing us as quite exactly people, is the one thing that you can't avoid if you think like this. Because if you see us as people, you have to see what happens to us as dreadful. And you don't immediately, upon being told of the latest awful thing, say any variant on “I don't know that person's program.”

Aspie Supremacy can kill.

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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.

People can be a bit like water.

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

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

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

Neville stared at their guilty faces.

“You’re going out again,” he said.

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

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

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

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

But Neville was clearly steeling himself to do something desperate.

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

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

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

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

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

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

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

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

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

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

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

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

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

Sheila Bienenfeld, the psychologist reviewing the book, said:

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

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

As I wrote in my last post at the time:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Identical behavior, contrasting responses

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This post has been forming itself in my head ever since I went to both a DD self-advocacy conference and MIT within the same week last May. I’ve just for whatever reason not had the chance to actually write it.

I really enjoyed spending time at MIT. People there accepted me more or less as I was, and accepted a lot of other disabled people as well. In fact, their entire Human 2.0 symposium, that happened while I was there, dealt with the fact that disabled people get a lot of technology before other people do, and was about how technology that could enhance everyone’s lives was being developed specifically for disabled people all the time.

At some point there, I had a bad migraine and needed to lie down. They allowed me to lie down backstage under a table. I expressed fear over this. They were shocked and said that people lie down on the floor all the time at the Media Lab, that it was just part of how the place worked, and that they couldn’t imagine why I was afraid to lie down in public. I didn’t know where to begin with the sort of cascade of connections that went through my head more than ever at that point, but a steady stream of which had been falling through my head the entire time I was there.

In May, I went from a self-advocacy conference for people with developmental disabilities, to MIT. This involved an extreme contrast in what the lives of many of the people there were like, in terms of what sort of person they were classified as by society in general. In other ways, there was no contrast at all.

When I was younger, I went from assorted programs for students classified by the educational system as “gifted”, to assorted programs for people that the educational and medical systems had written off with a whole variety of labels. There was a great contrast between the way people were treated. There was, yet again, less innate contrast between the people involved than most people imagine.

If I were to describe being places where people routinely ate non-food items; had a variety of unusual tics; appeared to believe things that most people would call delusional; found it impossible to learn in regular classrooms; looked at first glance (and had been thought to be by others) what most people call “crazy” or “retarded”; were frequently under the care of neurologists, psychiatrists, and other such professionals; had unusual mannerisms and postures and behavior that in most places would be considered bizarre; and frequently had pretty extreme delays in areas like self-care; which one of these places do you think I’d be talking about?

If you thought special ed… the answer is yes.

If you thought mental institutions… the answer is yes.

If you thought gifted programs… the answer is yes.

I made the transition between these situations more abruptly than most, so I was able to see the similarities and the contrasts very starkly. Most people who have been in only one or the other situation, or whose transition between one and the other situation is gradual, or whose perceptions of other human beings come pre-filtered and pre-packaged to the extent that they see great differences merely based on what classifications the people belonged to… these people would not necessarily observe these things. I did observe them.

Lying on the floor is one of the things that starkly cuts through all of these situations in my memory.

I remember me, and a lot of other people, lying on the floor at places like nerd camp and other gifted programs. We were seldom, if ever, chastised for it.

I remember a tall boy in a mental institution who tried to lie on the floor in the hallway. I remember staff converging on him and saying they would have to do something about it. He wasn’t hurting anyone. He wasn’t even blocking anyone’s entrance to anywhere. Another inmate tried to say so. The staff told her that he needed to learn to do as he was told and needed to learn to look appropriate. They called for reinforcements, since he was a really big guy, and then grabbed him and carried him off to the isolation room while he fought them. His fighting them was seen as a symptom of a violent nature, rather than the natural reaction of someone who has been grabbed by several people to be carried off to a small, locked room, for doing something he considered totally normal.

People don’t always realize this simple fact: Lots of people do the same things for the same reasons, regardless of how they have been classified by the medical profession. Once the people doing these things are in an environment where their every move is watched and pathologized, they can get in trouble for it, or get put on an extensive behavior program for it. My ex-boyfriend ate paper and most people saw it as an eccentricity, because he was labeled gifted. There were a lot of people who ate paper in other settings, probably for the same reasons my ex did, whatever those reasons were (I never asked). People put them on behavior programs for it, because they were considered to be doing it “because they didn’t know any better” (and whatever anyone said in public, it was obvious they thought of a lot of us as “crazy” or “stupid” or both, and thought those to be the reasons we did anything they didn’t like).

I used to be unafraid of doing things like lying on the floor, even sleeping on the floor. Psychiatry made me afraid and called that an improvement. I walked into MIT afraid, and they were astounded at my fear, and disgusted at the sources of it.

I went through gifted programs terrified of when someone would discover that I understood less than they thought I did (in sociological terms I was aware, as few others were, that I was discreditable, but only partially discredited). But because of the privileged life I’d led in terms of that classification, while I legitimately feared being put in mental institutions and labeled, I never dreamed that I would become afraid of as innocuous actions as lying on the floor, running around squealing in happiness, or a number of actions that were deemed totally normal in the environments I lived in. But I did become afraid of those things.

For three days, twenty-nine staff members at Elgin State Hospital in Illinois were confined to a ward of their own, a mental ward in which they performed the role of “patient.” Twenty-two regular staff played their usual roles while trained observers and video gameras recorded what transpired. “It was really fantastic the things that happened in there,” reported research director Norma Jean Orlando. In a short time the mock patients began acting in ways that were indistinguishable from those of real patients: six tried to escape, two withdrew into themselves, two wept uncontrollably, one came close to having a nervous breakdown. Most experienced a general increase in tension, anxiety, frustration, and despair. The vast majority of staff-patients (more than 75 percent) reported feeling each of the following: “incarcerated,” without an identity, as if their feelings were not important, as if nobody were listening to them, not being treated as a person, nobody caring about them, forgetting it was an experiment, and really feeling like a patient. One staff-member-turned-patient who suffered during his weekend ordeal gained enough insight to declare: “I used to look at the patients as if they were a bunch of animals; I never knew what they were going through before.”

from The Lucifer Effect by Philip Zimbardo

And that’s what happens during what people know as an experiment. Imagine being put in such a situation because something about you was deemed pathological, by people who viewed you as such.

I enjoyed my week at MIT. But every moment I was there, I was conscious of what an autism “expert” had told me, which was that I didn’t belong at a university at all (if I ever get an MIT business card, she will receive one in the mail). I was conscious of being a privileged member of what was otherwise considered an outsider-caste to that whole system, conscious of this in a way that even with my fears I had not been conscious of prior to experiencing being shoved into the typical environments of that caste once others discovered my place in it. I was conscious of a society that tolerates and even celebrates certain behavior among those it considers highly intelligent, while condemning others to torture for the exact same behavior because they are considered either not intelligent enough, or too crazy, or otherwise deviant, or some combination of the above.

And I came home to my own apartment, where last week a staff person felt he had the right and even the obligation to report to my case manager that I was grumpy in the morning before breakfast (edited to add: in fact, he never made me breakfast, or lunch either). How many of you out there who share this morning grumpiness trait with me have it reported to a case manager and put in logs that would normally go into your permanent record, and even treated as signs of your overall personality?

(I should note that even many of those considered “highly intelligent” do, have, various, labels, and things like racism and classism can greatly influence what label a person gets. If I were anything other than white or middle-class, I might have had very different sets of labels much earlier.)

It’s because of experiencing the extremes of this so rapidly and close to each other, sometimes in such combination with each other (because my life can’t just be sliced up into two categories without any complexity to them), that simply having my normal behavior accepted at MIT for a week isn’t good enough for me. I won’t be satisfied in this regard until everyone else with a psychiatric or developmental label (or who would get such a label in certain situations) can enjoy the same freedom to be themselves in completely harmless ways, and the same level of inclusion in society and decision-making that affects us, that those of us considered “highly intelligent” often enjoy, and until nobody gets written notes in their official record for being a grumbly grouch before their morning breakfast or coffee.