How out of touch the LGBT community is about disability.
At an LGBT community center, I talked about how many developmentally disabled men, in particular those living in institutions with no say over their lives, have been forcibly castrated for showing sexuality, especially gay sexuality, and/or for cross-dressing.
The first question out of someone’s mouth (a nondisabled trans gay man):
"Did they ask to be castrated?”
He wasn’t being sarcastic. He was actually equating forcible castration with voluntary sex reassignment surgery. And there was an undertone that maybe I hadn’t thought of that, maybe I didn’t know enough about the situation to be condemning the practice.
I had no words, I couldn’t even respond. Like… it shouldn’t even take explanation how wrong he was, and I couldn’t find words to explain the gulf between us. Still barely can. But:
HAVING YOUR GENITALS FORCIBLY CUT OFF FOR BEING SEXUAL, OR FOR BEING LGBT, IS NOT THE SAME AS BEING TRANS AND HAVING YOUR GENITALS VOLUNTARILY MODIFIED BY SURGERY.
I don’t know how that can be confusing.
Why is there no short, easy-to-remember phrase for this level and kind of assault on a person’s body? Like abuse, sexual abuse, and forced surgery don’t even cut it.
Years and years ago, I lived near Santa Cruz. One day, I was waiting for my friends. And I encountered some truly horrible people.
It was a husband and a wife, or so they said. I have no reason to trust anything at all that they said.
They approached me and started talking. I don’t remember all of what they said. I know they kept talking about sex. They kept touching me. I kept trying to keep them from touching me. They felt wrong, like a dark cloud was all over them. The man said horrible things at the expense of the woman.
Then they noticed that I was stemming on a koosh ball. (I’ve unfortunately lost it, and it was a kind that isn’t made anymore and I can’t find anywhere. If anyone knows where to find a “so-soft koosh ball” I’d be really interested. They have thinner pieces and are therefore softer. Mine was purple.)
The man told me that he had a koosh ball just like mine, in his car nearby. He told me that if I came to the car with him, I could see it. I declined.
They started getting pushier about trying to get me to go to the car with them.
I told them I was waiting for my friends.
They told me “You don’t have to wait for them. We’re your friends. We’ll be your friends. Just come with us.”
I stuck to it and eventually they said some nasty things and walked away.
I went to see my friends, spent some time at their house, went back downtown, got picked up and driven home, and only after I’d been home for awhile did I realize what had almost happened to me.
Understand, I was about 23 years old when this happened. I was not a child, even if their approach to getting me in the car was the same one you’d use on a child.
Also understand that soon, in the newspaper, I read about a spate of stranger abductions/rapes of developmentally disabled women in the same exact area of town.
And then understand that although I detested them on sight, I did not realize the level of danger I was in until I got home. Nor did I realize why I was being singled out, nor recognize the “get in the car and we’ll show you this neat toy” thing from all the “stranger danger” stuff I’d been taught as a kid.
There were two reasons for this:
One, you don’t expect people to do that to you as an adult. I mean, you expect potential rape, you don’t expect people to say “get in the car and I’ll show you a toy” to do it.
Two, I have a terrible ability to remember things in the moment. I remember things when something specific jogs my memory, at which point I remember them incredibly well. Better than most people would. But I don’t remember them unless something does very specifically jog my memory. And I certainly don’t remember them when my mind is too occupied with the sensory bombardments of being downtown on a busy day in a crappy, painful wheelchair.
I had a similar problem when I was a few years older. I was living with someone while construction was being done on my apartment. The person I was living with was in a legal battle.
One day, my roommate left the apartment for an appointment. A woman knocked on the door. I opened it. She came in. She inspected the entire apartment. She looked in every room, she looked underneath things, she looked in corners, it was weird. Then she left. Without a word to me.
It turns out she was a lawyer for the other side of the legal battle. She had waited until my roommate was gone, figuring, correctly, that I wouldn’t know enough to keep her out of the apartment. My roommate was beyond pissed off at me, and screamed at me for awhile about what an idiot I was.
I had gone on autopilot. I was used to strangers coming into my apartment (otherwise known as staff, at that point there was a new staff person every week because I didn’t have “regulars” yet and my case manager was as crappy as they come). I didn’t know I had any right to turn them away, and even if I’d known I might have let them in anyway if I didn’t remember.
What both of these incidents have in common was that at the time they were happening, I might not have liked what was happening, but I didn’t recognize the danger in what was happening. I didn’t fully understand what was going on. I got lucky in both instances, even if the second one wasn’t good, still no serious harm was done.
But at the same time as the second one happened, my roommate and I were getting death threats. People were walking up to the door and screaming threats to ourselves and our pets. What if the woman I’d opened the door to had been intending physical harm, rather than “just” legal harm? I hate to think about it.
It’s not that I’m unaware that danger can exist. It’s that while I’m going about my daily life, my mind is too occupied with far more basic things. And when I do constantly feel in danger, it’s no help to me because my instincts aren’t in line with what would actually help, and the sense of danger is more vague than tailored to specific instances. But most of the time, I am too busy coordinating sensory input and motor output (not to mention all the cognitive stuff in between) to anticipate and respond to situations like this.
The only way that I can do anything about it is to constantly practice rote responses to specific situations, over and over, until they become so automatic that they require no more thought than anything else does. Especially if I can get a situation to trigger a specific response, and ingrain that response thoroughly. That works better than anything.
But simply teaching me intellectually about what to do won’t work.
Intellectual teaching doesn’t filter down into my actual responses to everyday situations. It’s like it exists in a totally different universe than my actual everyday experiences and reactions and real-life situations. I don’t know why it doesn’t work, but it doesn’t work.
And people seem to expect me not to know things and then try to take advantage of that. Whether they’re successful seems to depend more on whether my other reactions happen to let them get away with it or not, not on whether I respond like I ought to respond because i know what I ought to know. Because even when I do have common sense, I can’t seem to call it up at the appropriate time.
Social predators, self-examination, and the unwritten rules we go by that can be twisted against us.
So in the first part of the post (I wrote it last week) I had described, at length, things a social predator had done to me in terms of cyberbullying, and how to spot people that you might want to avoid. It was long. I’m not including it now. Maybe I’ll include it later. But basically one of the biggest things she did, was she would do this thing where she’d tell me she would be triggered if I were to say that I had anything even remotely in common with anything she said about herself. Not just say it around here, but say it anywhere. And then she’d systematically do things I was going to do (some of which were really blatantly manipulative) and therefore prevent me from doing them because I was so invested in thinking that she was always right and her demands were always just, because she was an abuse survivor and lots of other things. She did a lot of other things too, it would take too long to describe them.
Please don’t use the following description to claim I’m somehow unique in the things I admit to doing, in my past, here. I see people doing things like this all the time, all over the place, on tumblr and elsewhere, especially in communities where a lot of people have been abused. I’m simply stripping it bare and describing what happens, because these are things that truly horrible abusive people can use against you. And honestly even though it can hurt to look these patterns in the face, it hurts less than having someone use them and twist them against you. Trust me. I’ve been there. So anyway, here’s that part of the post, under the cut.
Liars are so unimaginative, all they do is accuse other people of their own doings and co-opt their words.
That really fits a cyberbully I encountered (and was just about to write about, although not this exact same thing she did). She’d do something then immediately accuse me of doing it. If I saw her accusation that i’d done something, I’d immediately know to look and see if she’d done it to me. If I saw her do something to me, I knew to expect an accusation that I’d done whatever it was to her. It was that clockwork.
some people use anti-capitalism to mean “I’m entitled to your space, your time, your labor, and everything you own.” and some people use anti-abuse to mean “I have good consent. I would never hurt you. How dare you say I’m hurting you? You know how devoted I am to fighting rape culture.” And some…
OMG yes my stalker completely used the values of the community we were in to play other people against me (and towards her) in a way that’s not even funny, really scary actually. She used extremely common stereotypes and twisted and bent them back on themselves in such a skillful way I’ve never seen anything like it. (For instance, twisted things — real and unreal — around, to make herself look ultra-oppressed, and me look ultra-privileged, in a way that wasn’t true to either of our actual experiences of the world. She managed to simultaneously use various community values, and various stereotypes she knew everyone still held whatever they actually SAID they thought.. and twist and twist and ugh it was awful. I could see her doing it but couldn’t explain it well enough to stop her. And she did a lot of upside-down twisty-things too. Like she used my language problems against me, both my trouble understanding and trouble coming up with certain kinds of language. And at the EXACT SAME DAMN TIME she managed to make me look like an eloquent person with no language problems, who was using her ‘language problems’ against her. That was kind of her specialty, accusing me of doing things to her while doing them to me herself. It got to where I could predict her next accusation based on what she’d just done to me. And I know none of this connects exactly with the main post, but it stems out of the same thing I don’t have words for.)
When will scientists invent a button that makes your abusers feel the suffering they inflict on others when you press it?
What do I do?
Someone just contacted me (or at least, I just found the notification, which may not be the same thing) on my caregiver abuse post on my main blog, saying that her live-in caregiver has been abusing her for a long time (really long time) and she wants out of this.
I’m still recovering from surgery and I don’t have as much cognitive, physical, or financial resources as people seem to usually expect out of a “well-known disability blogger”. Even at the best of times. Let alone now.
Does anyone know what to do in a situation like this?
I’m scared anything I thought of first would just screw it up even more. I know that abuse situations are really delicate, because I’ve been in them before. At the same time, I know how desperate they are and how important it is to have help.
Does anyone know what to do?
I haven’t even posted the comment on my blog yet because I wanted to get advice first.
Disability “allies” who care more what authority figures say about us than what we say for ourselves (ie anti self-diagnosers)
Disability “allies” who think our peer support is disastrously preventing us from “getting the help we need”.
Disability “allies” who don’t allow actual disabled people to lead self advocacy events and trainings.
And/or who tell other self advocates not to listen to the self advocates who are actually talking about improving services and making sure our rights are respected and stuff.
Omg I went to this horrible “self-advocacy” meeting once where I basically got *WRITTEN UP* for engaging in actual self-advocacy and telling off the “facilitator” for controlling the voices of other disabled people.
Written up. As in. I went “AWOL” even though I was an adult allowed to go wherever I wanted, with or without leave, so I was written up as going AWOL. She wrote me up as hitting her when I didn’t hit her or even actually touch her (I did brush by her sleeve near her wrist at one point but everyone else present agreed I did not “hit her really hard on the upper arm” or anything remotely close that could even faintly be mistaken for that, and she could not produce any evidence that I had). And she wrote me up for “trespassing” because I couldn’t stop walking (movement disorder) and walked into a fence before I could stop, after leaving the room. Which was not, legally, actually trespassing, in any sense of the word.
I complained to the guy who was supposed to be the disabled guy who sits in on the meetings to make sure that everything is happening fairly. He was a friend of mine. I hoped he’d listen.
He said he’d never noticed her controlling anyone.
I told him that she controlled people primarily with body language and visual cues, things that she was deliberately doing because the guy watching her was blind and couldn’t see them.
He got very uncomfortable at that point.
He told me she was his boss. She was his boss and he was the one who was supposed to make sure she behaved ethically. No conflict of interest set up by the agency there.
Then he said:
"You have to understand… I really like my job. I like my job a lot. I’ve never had a job that pays this well. I’m going to have to ask you never to bring this up with me again, it’s too upsetting."
So… yeah, the guy who was supposed to be making sure they were ethical, was too afraid of losing his job, to actually do his job.
I could tell he believed me, he just didn’t want to. And the guy was really terrified of conflict in just about all forms. He was also unaware of some aspects of having a cognitive disability, because his disability was entirely physical. I don’t have an intellectual disability but I do have cognitive disabilities in common with many people with intellectual disabilities so I was more able to see the ways that she controlled people, because people have used those same tactics on me. She also told me that my communication method took too long. And wrote me up (how can you write a person up for this) as “having a huge sense of entitlement” for, you know, wanting to be treated like a human being and wanting to see everyone around me treated like a human being.
She also told me that I was destroying the trust she had built up carefully with all these people.
And a lot of other terrible stuff.
My staff person was also written up, for defending me as she screamed at me about what a horrible person I was. She did this after most people had left so the only real witnesses were me and my “renegade staff”.
Renegade staff is what she referred to my staff person as.
For defending me.
Against obvious horribleness that any decent staff person would be defending their client from.
And she did her best to make sure I could not participate in local self-advocacy activities and that the agency she worked for (who controlled all DD services in the area) saw me as automatically bad and horrible.
She was a total asshole, mind you.
I saw her using looks to control people.
I saw her cutting off people with slow speech.
I saw her controlling what people could and couldn’t say.
I saw her telling people what and what not to say.
And she had this horrible condescension to her that just oozed off her.
And she controlled me. She did it by neglecting everything she told me I “had to understand” about everyone else there. ”You have to understand they process information differently than most people do.” No shit Sherlock, I understand that better than you do. But she basically deliberately used my information-processing difficulties against me, both by simultaneously denying they existed, and making it impossible for me to react or respond to her because she was using them to manipulate me into being unable to respond. I’m not being very articulate there but I expect anyone who’s had their information processing difficulties manipulated in that way knows exactly what I mean — it’s done by simultaneously manipulating those difficulties and denying their existence, either overtly or covertly.
I wrote this about the experience when it happened about eight years ago:
It’s still fairly traumatic to think about and read about it all over again. It was a terrible experience, I felt like she was crushing people with one hand, crushing me with the other, and keeping her hands pushed apart to keep us from connecting with each other. I know she saw me as a threat because of the bullshit writeup I got in my behavioral file or whatever. I still have trouble believing she had the audacity to claim to be for self-advocacy and then write up a 25-year-old adult as “AWOL” because I left a room without her fucking permission, and to make up a bullshit assault story. (I did walk towards her angrily but then I turned away and my hand brushed her sleeve, not even making contact with her body even through the clothing. But even in the heat of the moment there’s no possible way you could legitimately confuse that with being “hit hard on the upper arm”. I remember asking “Um… did she show you any injury that would be consistent with being hit that hard?” They said “Um…. no.”)
Anyway… horrible experience for me, but worse experience for the self-advocates who couldn’t walk away from her. It was clear that in that room, the only agendas that mattered were the ones that were agency-approved. And that is NOT self-advocacy, that’s a farce.
Practically everyone thinks they’re doing either the right thing, or the only possible thing, at the time.
There are major exceptions but I’m not talking about them here.
This goes back to how we all tell ourselves stories about the world. And in most of our stories, we are the good guy.
I sometimes get into other people’s heads. I don’t know how and I don’t know what I’m doing and I rarely intend to do it. They don’t have to be currently alive. I just have to know a little thing that moves me in the right direction any for a split second I am not me anymore.
There are all kinds of things in there that are very different from me and from each other. People with emotional and intellectual landscapes that, while everyone contains the same component parts, are so foreign it’s amazing to imagine they exist.
But everyone this has happened with, they all thought they were doing the right thing at the time. And if part of them knew it was wrong it was heavily buried under stories. Sometimes deliberately, sometimes not so deliberately.
At some point - I actually remember the exact moment but prefer to keep it private - I realized that whatever knowledge this ability gives me, it does not, not directly, give me knowledge of right and wrong.
Because on any given issue, including issues that are quite dear to me, I’ve seen into the viewpoints of people on all sides of them. Not just the words and ideas, but the memories and emotions and live experiences that lead each person to be certain they are right. And from the point of view of inside that person, every single person is incredibly persuasive. None more than the next.
And that is what is the same in everyone who has a sense of right and wrong at all. We all have experiences and thoughts and emotions that tell us what we think is right. We all(*) have stories we tell ourselves, that we get so caught up in that we mistake them for reality. And all these things combine to give us an idea of what we think is the right thing to do. Our to justify our own actions to ourselves.
So in a less direct way, this ability does tell me something about right and wrong. It tells me I am as untrustworthy as any other person to figure it all out on my own. I mean most people agree on the basics, but when it comes to the complicated execution in real life situations? We all have different ideas and many times those ideas serve our own biases, stories, specific life experiences, and hidden motivations.
Sometimes what I see scares me. I’ve seen into the mind of someone who got fired up with righteous anger and a lifetime of injustice and played with some really dangerous symbolism, started a movement… People died. He’s not famous. Few people outside the movement know his name. But as I was learning about it that thing happened… And suddenly for seconds at a time I felt like I was him or some of the people around him and I got caught up in the emotion of the moment and I wanted what they wanted and then… I was on the outside again, myself again, knowing the outcomes of their actions, that may have been avoided if they were not so sure they were right.
That kind of thing gives me whiplash.
I know, I’m autistic, I’m not supposed to do this, but from what I’ve seen, intense involuntary empathy, of many kinds including this, is a feature of being autistic for many of us, no matter what the experts say. I can’t voluntarily put myself in someone’s mindset, but I often find myself there.
And in the aftermath of the attempted murder of Issy Stapleton, I find myself really really upset at all these autism parents who call for more empathy any time someone says that murder is absolutely wrong and that judging or condemning it is a terrible thing.
Luckily, I have not seen inside the mind of Kelli Stapleton. I’ve seen the edges, and the storms, and I don’t want to see it from her perspective. I would want to wash my brain out afterwards.
Some of her supporters are right about one thing, I think, but totally wrong in the conclusions they draw from it (and probably wrong in the ways they come at it too, but that’s a finer distinction).
It is, I think, actually true that put in the right position, most people would find it possible to kill and to feel right about killing even when that killing is a hundred prevent wrong.
The fact that I could see myself getting mind warped enough to kill, does not mean that the right thing for me to do is sit around at every murder extending sympathy for the murderer.
Because… How do I even try to explain this? Killing another human being is something hardwired into most human beings as a really bad idea. Most people have a really thick barrier between themselves and murder. To become a murderer, they have to erode that barrier down more and more and more and more until they can do it. (And once it’s done, they have an incredibly hard time putting it back up. One murderer likened it to having a wild animal loose in your brain that you have to restrain.)
Lots of things can erode that barrier. Some things are so powerful they can smash it down all at once. Other things pick at it piece by piece until they finally chip through to that other side.
But that means there are people whose barrier to murder has been chipped down to an inch thick. And that means that anything that chips down that barrier even an inch is a danger to their potential victims.
Some things that I know erode that barrier:
* Seeing murder of a certain class of person as more understandable or acceptable. That includes disabled people.
* Saying that murders occur because parents of disabled children don’t get services. There’s a proven correlation between media coverage of this sort and an increase in murders.
* Public sympathy with murderers of a certain sort, such as parents who murder disabled children.
* Saying it’s understandable for parents of disabled children (or of disabled violent children, or of disabled children in certain specific situations) to murder those children.
* Dehumanizing the victims
Every single one of those things erodes the wall between being a potential murderer and a real murderer. Every single one of those things is a serious threat to disabled children. People who say any of those things are, knowingly or not, endangering disabled children. And adults. But children are usually more threatened.
And if empathy with most killers is your thing? You would not be so hell bent on destroying those walls in their heads. Because they will have to live the rest of their lives with the consequences of having killed. And those consequences are not pretty. Shattering that wall shatters important parts of the self. Very few people can recover.
That’s of course nothing compared to the devastation that happens to the victim. But it’s still devastation. And anyone who had an ounce of actual empathy (including actual understanding) for people who have killed people, would not be focused on making that person’s actions seem understandable. Because that is just setting up the same tragedy the murderer and their victim and their families just went through. Eroding a wall. Anyone with an ounce of understanding of how that wall gets eroded, would back off in horror at the very thought of eroding it in another.
Many of the people calling for empathy are not actually people understanding what happened or how it happened. They are people whose walls are partially eroded themselves, who can see that if that (few feet, few inches, few millimeters?) of wall were gone in themselves, they would have done the same thing. And since they can’t see themselves as bad people, they say “she is not a bad person”. And in doing so they erode more and more people’s walls. I still remember the two or three murders that happened the WEEK “Autism Every Day” came out, don’t tell me that’s coincidence.
Saying that murder is wrong and inexcusable. Saying that disabled children are not acceptable targets. Saying that extending this twisted brand of understanding to child murderers is dangerous. THESE ARE WAYS WE KEEP WALLS AGAINST MURDER INTACT AND BUILD UP WALLS THAT HAVE BEEN DAMAGED. Condemning murder builds up walls in ourselves and in other people. We need those walls to keep those on the edge from stepping over the edge. .
Most of what people are calling empathy here is just self-pity. And self-pity erodes those walls and warps the conscience to believe the feelings of would-be murderers are more important than the existence of their victims.
True empathy for either murderer or victim would have you doing anything you could, anything at all, to prevent anyone’s internal walls against murder from eroding any further. Knowing that most of us are capable of murder should only strengthen that desire, not weaken it. It’s the near universal desire to believe oneself a good person no matter what one does, that gets people so twisted up that they would erode those walls further rather than admit, “we are all capable of terrible things, and that means we need to strengthen these walls to prevent them happening, whether it’s murder or something else”.
And if you’ve never seen the horror and betrayal from the POV of the victims… Don’t tell me I lack empathy.
I love you Issy.
(*) Except a tiny number of people who have managed to destroy stories, and the mechanisms that create them, forever. They are rare, I am not one of them, and I have had only the tiniest glimpse into the mind of any of them, which stunned me to the core. Because I could see in one tiny instant the enormity of the difference between him at that point in his life and me at this point in my life. And that was… As if my mind is full of layers upon layers of machinery, never noticed in full until I saw its absence in someone else. And when I saw that difference, I saw why people didn’t believe him when he tried to talk about it. But people like him are still fallible in all kinds of ways that don’t have to do with stories.
What I wrote earlier today seems to have opened up a can of worms in my head. I don’t think it’s argue can of worms. But I didn’t realize the extent to which I’ve tried to forget some things.
Particularly the thing where I took any opportunity to get out of that house. And my dad slept in his running shoes so he could catch me. I think usually in the end he must have caught me. Or gotten me somehow to come back into the house.
But there was also the time I rammed my way past him and I got as far as the sidewalk outside my neighbor’s house. And he caught me there and tackled me. And I was fighting with him and screaming at the top of my lungs.
And all of the neighbors have to have heard the commotion. But only one came out to ask if everyone was okay. And she called 911 and I think I got locked up, and I know that was the time the paramedics took bets on whether I was on PCP.
And I think this was all nobody’s fault not mine not my dad’s not anyone in the immediate surroundings.
Although maybe the psychiatric system had set us up for this. And something about the house I lived in. But the system seemed to rip or family to shreds without anyone noticing what was doing it. People blaming each other and ourselves. And I think there are still gashes in our family that may never heal.
And violence seemed like a tangible thing in the air. It wasn’t specific to me. It was something that could happen in any of us. Directed inward, directed outward. Physical, emotional, sexual, cognitive, whatever. It ripped through all of us, each in different ways.
And now we all look away from it and pretend the explosion in our house never happened. I think I pretend less than the others, but around them I try not to talk about it because it just sets it off all over again.
And for years every night I dreamed I was trapped in that house pounding and kicking and scratching at the walls or whatever people showed up in the nightmare. And the dreams seemed to feed off that violence, so I had to train myself, “I am dreaming. I need to get out of this house. Don’t hit anything or anyone. Just get out. Now.” And the air would turn solid or there would be doors on top of doors. But I still learned to get out and keep running until I was out of the neighborhood. Those dreams were too accurate, every blade of grass exactly where it was in real life. I never dream that solid or that accurate otherwise.
But I don’t have as many of those nightmares as I used to. I had to learn how not to react. I had to learn to put distance in the way.
But better to have nightmares now than live the nightmare back then. It was like getting hit by a whirlwind and I never want to experience it again.
But I’m aware of it. I’m always aware of it. However much I try not to think about things, I’m not capable of deliberate forgetting.
But I’ve never understood. Sometimes I try to force myself to understand things. I’ve learned that’s a very bad idea. When I try to force understanding, I come out with false answers. The same way that when I force language, I get random crap that sounds right but means nothing.
So I don’t have answers. All I know is that an explosion hit the family. That violence of many kinds happened. To all of us. From all of us. And that whether the psychiatric system ignited the whole thing or not, it certainly made things exponentially worse. And that while I’m sure everyone wants to forget it ever happened, the effects are never going to go away, whether we pretend they don’t exist, or not.