Personality or Coping Style?

[Warning: Don't read if you were institutionalized unless you're willing to risk being triggered.]
I'm reading The Intelligence of the Feeble-Minded (L'Intelligence des Imbéciles) by Alfred Binet and TH Simon, published around 1909. Alfred Binet, in case you don't know, was the one who invented IQ tests. In this book he and his coworker study a variety of subskills to see if they vary by intelligence level, as well as providing very detailed behavioral descriptions. It's quite interesting.
One thing they discuss is personality. They say that among 'feeble-minded' people there seem to be two personality types - rebellious characters and docile characters. These, they say, are unrelated to intelligence level, though the rebellious ones are often underestimated because they're harder to test.
The docile types are basically super-compliant people, who will follow all sorts of commands given, no matter how pointless. For example, they repeatedly took this one guy's cap and hid it and told him to find it, over and over, and the most resistence he showed was to lean away slightly to make it harder for them to reach his hat. Finally, he refused to get it off of a horizontal bar, but that was the first refusal after obeying the same order dozens of times. They say these people are easier to test, although they can be too agreeable. For example, when studying suggestibility, they got one guy to pretend there was an invisible dog and an invisible General, to the point where they thought he actually saw them, until the following conversation:

"Q. Very well, that little dog, and then the General, were they people like us?
A. Ah! the General, yes. (He has not understood the point of the question, he wishes to say that we are not like dogs).
Q. But is it true that you have seen him?
A. Yes. (He smiles, his eyes glisten).
Q. Well, why does that make you laugh?
A. Because you talk to me of the General. (Seems confused - laughs as he lowers his head).
Q. But why do you laugh in speaking of the General?
A. It's a joke you played on me.
Q. But have you seen him?
A. (With hesitation) No, I didn't see him.
Q. But you talked with him.
A. (Hesitating) Yes."

At this point, they recognized that the guy was not suggestible enough to have hallucinations when the doctor suggested make-believe things, he was just docile enough to play along with the doctor's game. As they said in summary:

"We believe that Albert was never duped. And now he is a little ashamed of his compliance and is in a very troubled and complicated mental state when we question him. He still wishes to agree with us, for he is too timid to resist; hence his contradictions. All the time he tries to divine our thoughts; we could still make him say anything we wished."

The rebellious type is quite different. One girl they described threw any object they gave her onto the ground (without acting angry). Some act surly and defiant, while others start crying when asked to do anything. Another woman sat smiling and giggling while answering 'I don't know' to every question, even ones she could answer when she tried. He notes that the rebellious ones typically are much more likely to cooperate with easy tests than hard ones, making them seem less capable than they are. Their performance varies depending on who does the tests, because some people are better at getting them to cooperate than others.
Although it's clear that they probably prefer running tests on the docile people, they describe the rebellious ones as showing a positive form of assertiveness on those tests where agreeing makes a person seem dumber. For example, they don't go along with the invisible dog and the invisible General.
One caveat they give, in my opinion, explains everything about these personality types:

"We shall not here treat this subject fully; certain material conditions have hindered us; it is not the imbecile in a hospital, it is the imbecile in his family or in a family colony that one must know. We have seen our subjects only in the unnatural surroundings of a hospital, or worse in the narrow limits of our office, where we had called them; seated near a table, replying to questions, talking, or submitting to different tests, they were somewhat like students at an examination. A professor would form a very narrow view of the youth of his time, if he saw them only during an examination. We resemble somewhat such a professor."

To me, those personality types sound like ways in which people can cope with being profoundly disempowered. All the people they studied, remember, lived in an institution, and even before coming to live there many of them - especially the lowest functioning ones - probably had little or no control over what happened to them. In the institution, people could do all sorts of things to them, giving no reason whatsoever, with the expectation that they would obey. For example, in one chapter, they discuss tests they ran on pain perception, in which they pricked their subjects with pins, pinched them, put their hands in hot water and put lighted matches to their noses to see how they'd react. The rebellious ones typically acted scared and tried to leave, one woman, for example, making up an excuse that it was time to go and eat. The docile ones cooperated, to a point that I think suggests dissociation: one guy was pinched unexpectedly and pulled back with a cry, but on seeing the serious expression the doctor had, he willingly let them prick him with a pin and showed no sign that it hurt.
Amanda Baggs and Laura Tisoncik, in their conversation on institutions, described what sounds suspiciously like Binet and Simon's 'docile type':

"Laura: Oh gee. I spotted it in you right away. How do I describe it? You were an obvious case of it. You had a kind of submissiveness that is not so much... it is a kind of submissiveness but it's not submission in any kind of normal way. Especially since you were oftentimes looking for where the rules were, so you could follow the rules. Without necessarily appreciating the fact that there weren't necessarily any rules for any particular event or... I don't know how to describe it. You were waiting or looking for the institution around you, as if, it's like, "Where is it, it's hiding here somewhere!" This is not necessarily a very constructive behavior out in the real world, because it is particularly passive in many ways, and because it is sort of like looking around for it. I really got a sense that you were looking around all the time for the rules. And terribly terrified that you were violating all the rules. And meanwhile not necessarily getting what actually should be done, because you were busy looking for the rules. It's a paradox there ...
Amanda: And then there were the apologies...
Laura: Oh yes. The neverending... to properly read the apologies, read them as "Don't hurt me! Don't hurt me! Don't hurt me! Please! Don't beat me up, don't tie me down, don't torture me!" Which, I obviously had no plans on doing any of the above, but again you were reacting to the situation as if you were still in the psych hospital. And that obviously wasn't the case, but again that's a typical PTSD sort of thing. And I certainly understand it very well, because that kind of an experience really makes an imprint on a person for life. You can't go through that experience of reaching that absolute bottom level of human experience without being seriously affected by it.
Amanda: As I recall it wasn't just actions I was afraid of, it was thoughts.
Laura: Oh yes, of course. I didn't go through that, but then I didn't go through brainwashing. You did. I fortunately spent most of my time in places where they kind of throw you in there, lock you up, and kind of forget about you. I think the only time I ever saw doctors at state hospitals was when I was being admitted and when I was being released. So there was nobody there playing warp-your-brain with me."

As for the rebellious type, that reminds me a lot of myself. In a setting where I feel safe, I'd have cooperated with many of his experiments (particularly the invisible dog and General, because I love to play pretend), but if he was one of my teachers at school, and particularly if he pinched me unexpectedly or otherwise tried to hurt me, I would not have cooperated. Indeed, I'd have to feel very powerless to even cooperate as much as his rebellious subjects did - for example, the woman who made up an excuse of going to eat to escape his pain tests stood by the door but was too scared to open it herself (rightfully so, as he'd probably have stopped her and if she tried to run away big burly attendants might have come to pin her to the floor).
Amanda Baggs and Laura Tisoncik also describe behavior like one of his rebellious subjects in the conversation on institutions (referenced above):

"Laura: ... I tended to look rather threatening. Not to mention the fact that the ward was very impressed with me when I arrived. The first time I was there, which was the only time I was around a lot of teens and the like, I would have gotten there anyway, but the last thing I did was pour a whole bunch of ink over the psychiatrist's notebook. I was sort of like a mini-hero when I arrived and the story got around, because the guy was a terrorist and a bully. And most people didn't have the courage to do anything to him or stand up to him or whatever. Although certainly there was a lot of discussion in the wards occasionally about killing him. So when you arrive as the hero, the courageous one, that tends to limit the likelihood that you're going to get bullied."

It's much more pleasant to think, as Binet and Simon seems to do, that the docile and rebellious behavior patterns are simply innate personality types. But I don't think that's the most accurate view. And it's upsetting to think of the suffering that their patients went through.

Solutions to Self-Advocate/Adult Autistic Issues

A lot of autistic self-advocates criticize the mainstream autism community for focusing so much on children on the spectrum, rather than arranging for help for the serious issues that adult autistics face. It's a matter of focus - on children and cure, as opposed to adults and support.
But it seems like many autistic self-advocates (myself included) do the same thing we criticize others for.
A couple of events made me realize this. First, for quite awhile, I've been a volunteer expert at AllExperts in the category of autism. And I've easily handled many questions from parents of autistic or possibly autistic kids, discussing issues such as how to get a kid to stop playing with spit and how to tell if your 9 week old is autistic without much difficulty. That's the typical sort of questions I get, showing the same kind of focus that autistic self-advocates criticize in parent-run autism organizations.
But one question I got was something I really struggled with. An autistic person was kicked out of his home, living in a salvation army hostel, and asked my advice. I hope my answer helped, I think I did fairly well, but it was really hard. I had to do a bunch of research and pondering and try to figure out if the organizations I was reading about would do anything to help him. This wasn't an easy answer to write like all the parent questions.
Recently, I was reminded of this by a question that struck the same feeling in me. This one was posted on several autism listservs I frequent. An autistic woman who lives in a group home is currently being threatened with going to jail for having what appears to be a relatively minor autistic meltdown. She didn't hurt anyone, yet they're calling her violent. And I don't know how to help her, what to say to her.
We use stories like these in our activism, to show why more support is needed, but when we are called upon to help someone in a situation like that, what do we do? We don't know how to help, we don't know what to do. We don't have the easy answers like we do for parent issues. And that's at least partly because even as we criticize their focus, we let it direct our focus. So we don't think as much about how to help these people no one seems ready to help.
It seems to me that not only are your beliefs about various issues important, but so is what you choose to discuss. And so often, the curebies successfully direct conversations about autism to their issues, their focus, and we don't fight that well enough.
So I'll do the research to see if I can help this woman. I'll try to at least direct her to someone who can help. And in general, I'll try to find, or make if I can't find, supports and solutions for these issues.

Unusually Good Asthma Doctor

A little while ago, I went to get a new prescription for my asthma medication. While I was talking to the doctor about my prescription, I asked her about how to make sure to take my medication regularly, something I've had doctors get mad at me for not doing even though it's executive dysfunction that makes me go off my medication and I really can't help it (I thought I'd blogged about that before, but all I could find was this).
She didn't give me any advice on that (which is too bad because I have the same problem with antibiotics) but instead she told me that I actually don't need to stay on my asthma medication if I have no symptoms. I thought the daily puffer (Flovent) was a preventative and the one I take during an actual asthma attack (Salbutamol) was a fast-acting symptom relief one. Which is technically true, but it turns out they actually do different things, whereas I thought they did the same thing over different time ranges. Flovent apparently reduces swelling, while Salbutamol stops spasms. Anyway, it turns out if I'm off both medications and breathing just fine, I don't need to take them - even the Flovent - but if I'm having to take the Salbutamol (and therefore, clearly having symptoms) I also need daily Flovent. So my instinct that I kept fighting against to only take my medications when I feel sick is actually right in this case.
What I really like about this doctor is that, unlike every other doctor I've seen for pretty much any physical problem, she treated me like a knowledgable person, who not only needs to know what to do but also needs to know why. Exactly how I'd treat a patient if I became a doctor. I love being treated like I'm capable of understanding things.

Good News?

I just read an article titled Multidimensionally Impaired: The Good News (Journal of Child and Adolescent Psychopharmacology, volume 15, number 3, pages 510-519). It's about a follow up study of a bunch of 10 year olds diagnosed with Psychosis NOS (translation: It's not schizophrenia or bipolar, but they are nuts!)
At the end, they have two example case reports. Reading through both of them, I can see clearly how the psychiatric system has mismanaged them. It makes me sad.
Firstly, there's 'G', a girl described as having a 'good outcome'. And she does, no doubt about that. Her childhood had some rough patches, but at 17 years old, she was doing well in a challenging school with several friends, looking forward to college. But that doesn't mean the psych system deserves the credit.
Her problems started when she was 6 years old. Her family was going through some stress (they don't say what was actually going on) and she had poor social skills and was having severe tantrums. They figured she was just stressed out, but after whatever problem the family was having was over with, G was still having tantrums. She was taken to a child psychiatrist, who put her on haloperidol.
Now, this is the first thing I question. Was anything else tried before putting such a young child on such a risky medication? I've heard many people complain that psychiatrists (who, unlike psychologists, can prescribe medications) don't seem to try any other solutions before leaping to medication. Obviously, unless he's a really big fool, the psychiatrist wasn't giving haloperidol to help her with her social skills. It's become unfortunately common to use neuroleptics to treat aggression, especially in developmentally disabled people and children. These are risky medications, and even worse, you aren't dealing with the cause of the aggression (except in the rare cases that it truly does seem to be a chemical imbalance). Just because the family stress is done doesn't mean it's done affecting G.
Anyway, G soon developed dyskinesia and was taken off haloperidol. She did fine for the next 2 years, and then they started her on risperdal for motor tics. (This is even worse. Unless it's severe, which it clearly wasn't for G, motor tics are just an annoyance. Not worth risking really nasty side effects. Besides, her motor tics could have been caused by the haloperidol she took at 6 years old.)
It was when G was 10 that her worst problems started. She started hearing voices criticizing her while she was in school and as she did her homework. Her medication was changed to trifluoperazide (from the patient information sheet, it sounds like yet another neuroleptic), but that didn't work. These voices were so upsetting that her parents pulled her from school. At 11 years old, she was admitted to a psychiatric hospital (the one the authors worked at) with explosive outbursts and unusual fears, as well as auditory hallucinations. Her medication was stopped for observation, during which time she was obviously not psychotic. She was, however, inattentive, distractible, and impulsive, so without looking for any other reason she might have trouble paying attention, they diagnosed her with ADHD and Psychosis NOS. The latter was said to be 'in remission' even though the symptom that lead to that diagnosis, the auditory hallucinations, were still ongoing. She was discharged with a prescription for methylphenidate, which she stopped taking soon after. The auditory hallucinations continued until a month after discharge, then stopped and have never recurred. At 13 years old, she had a labile mood but no other problems.
It's unclear what effort they took to find out G was still hallucinating. Certainly, they didn't know until G told them when she was 13. It's interesting that G's big problem was nasty voices, but that's not actually why she was hospitalized - she was hospitalized because of her outbursts and fears, which were most likely an effect of her hallucinations. Clearly, they failed to help her with those hallucinations. If anything, they helped her solely by getting her off neuroleptics, which in rare cases can cause hallucinations. Considering that she stopped her stimulant medication without big problems ocurring, it's pretty clear that med was probably unnecessary. I wonder about her school. Could it be that she was under a lot of academic pressure, and she reacted by hallucinating? Indeed, she might have been hallucinating at 6, too, and that's why she had her tantrums. And regarding her ADHD diagnosis, she was under so much stress at the time - even if just from being hospitalized and hearing nasty voices, and not also the cause of the nasty voices - that I put little faith in that diagnosis.
Now, G turned out fine. I suppose if she's under more stress later on, she might have another episode (in which case, I think you could make a good argument that she needn't bother seeking psychiatric 'help'), but at last report, she was doing great. Their second case report wasn't so lucky.
'B' was first seen as a two year old boy with speech delay and disruptive behavior. (They don't say what kind.) At 6 years old, he started having auditory hallucinations when stressed. He was hospitalized at 6 and a half years old, as a hyperactive, self-injurious boy with auditory hallucinations. At 11 years old, he was living in a residential treatment center. Methylphenidate had worsened his symptoms, and thioridazine and haloperidol hadn't had much effect. He was still on haloperidol.
B clearly has an early history of being institutionalized. That poor kid. Many 6 year olds are scared to have their mom leave them at school during the day, and when he's already under a lot of stress, he has to stay away from home - at an institution. And he probably guessed it was because of his behavior, so he probably blamed himself. They don't say when he started living in the residential treatment center, whether he went straight there or got to come home for awhile, but by the time he was 11 years old, he was living there.
He was referred to another hospital (the one the authors worked at) at that age with the following description: "aggressive behavior, extremely erratic and unpredictable relationships, extreme fluidity in functioning and unpredictable aggression, as well as poor reality testing, with distorting of experiences and hallucinations." The admission exam only showed anxiety. His haloperidol was tapered off. In the hospital, he was "very affectionate and clearly tried hard to cooperate" but got upset at shift changes and when the other kids teased him. He was sent back to the residential treatment center with the diagnoses of Psychosis NOS and ADHD and a prescription for methylphenidate (which hopefully had a better effect than the last time he took it).
That referring description, combined with the vastly different description of his behavior in their hospital, worries me. Either the referring doctor was greatly overrating B's problems, or he acted vastly different in the hospital than the treatment center. The first one suggests similar issues as my teachers had with me, overreacting, pathologizing and exaggerating the slightest thing. The second suggests either that he was really reacting badly to haloperidol, or that the treament center was a really rotten place for him. It's kind of odd that they gave him the same medication he'd already had an adverse reaction to earlier - as well as the note that this is the same meds and dx's that G got. What is it about them and ADHD + methylphenidate?
At 13, B was still in the residential treatment center, on methylphenidate, clonidine and carbamazepine. He had less ADHD symptoms, but he'd set two fires and was often caught cheating and stealing. He was not psychotic. Between that time and when he was 15 years old, he was transferred to a group home and then back to his home. He set a fire in the kitchen and was repeatedly kicked out of school for fighting. By the time he was 17 he'd vandlized, set fires, shoplifted, and assaulted (getting 2 years probation). He'd been hospitalized for 2 weeks because of self-injury and then was sent to another residential treatment center. He was on methylphenidate, guanfacine and buproprion. He was no longer affectionate and trying to please, instead he was explosive, impulsive, avoided eye contact and "spoke in a monotone voice, except when he argued with the adults in the room". He was diagnosed with ADHD, ODD, Psychosis NOS (in remission) and marijuana abuse. They were discussing putting him on a mood stabilizer and a neuroleptic.
B goes downhill from the nice but troubled 10 year old. By in large, all the adults - his mother and all the myriad of doctors - have been unable to help him. He got back home, but he was too disturbed. He seriously hurt someone and set fires that could have hurt people. He's got possible autistic traits that no one seems to have acknowledged or tried to understand (he had speech delay, he didn't like change, he avoided eye contact and he spoke in a monotone). He no longer reaches out to people like he used to - presumably he's learnt it doesn't help. He's probably been badly damaged by the long-term institutionalization he's gone through. Just about nothing's gone right for him, but at least he didn't get a jail sentence (after all that institutionalization, jail would not have helped at all). Those new meds probably won't help - none of the others did. I don't know if anything can help him now, it's pretty late.
So what's the good news?

Abuse: Disability Blog Carnival #36

Alright, I've got a lot of interesting (and sad) posts for this one.
Laurie Toby Edison describes the use of allergies for bullying. The victim is a girl severely allergic to peanuts. To get her to stop sitting with them, a group of girls all brought peanut butter and jelly sandwiches. It's a very shocking case, and her take on it is quite interesting.
Kay Olson describes an experience she had with institutional abuse. There are three aspects of this story that are quite important to highlight: firstly, the attitude that doing her job is an annoyance and unduly burdensome (reminiscent of the description of answering call lights in My Contaminated Smile); secondly, the power to deny the opportunity to communicate, which is such a big issue in the lives of assistive communication users; and thirdly, the 'catching' someone doing something they said they needed help with, something I've experienced as well. Another important aspect of her account is the reasons she didn't report it to that woman's superiors. She was afraid she'd be left in the care of a woman who not only was abusive, but who had a grudge against her in particular because she got in trouble with her boss.
David Hingsburger talks about a movie he's been involved with regarding the sexual abuse of developmentally disabled people in a group home. This movie has an important aspect of education, because it vividly shows the steps involved in reporting abuse.
Cusp describes the feelings evoked by the rejection of her application for DLA. Many of these I can relate to, even though I haven't been in that particular situation. When I was signing up for the disabled youth group I belong to, the form asked what I needed assistance with, and I was at a loss. I'm so used to just struggling on my own with the things I struggle with, telling no one or only my family. I finally told them that I tire easily from physical activity, that I have no sense of time, and that I find it hard to navigate by bus, but with each of those, similar things ran through my head. "But after all, I manage don't I?"
Athena, The Integral and Ivan describe their definitions of abuse. Much of this sounds like abuse from the environment, not from other people (although The Integral's stuff certainly is). An interesting idea. Does that meet the definition of abuse?
Bev describes the point of autism awareness. Another, more recent post I stumbled upon on her blog just now is a humorous description of how we need a cure for autism awareness. She discusses Donor X, a sperm donor who has fathered several autistic kids, and how, despite the positive view of autism that one of the parents has shown, the sperm bank removed his sperm. Not just identified it, added a marker stating he's had many autistic kids - they removed it. Can't have those people, even when one of his children has incredible memorization, reading, math and musical ability.
Casdok didn't submit a blog post, but she shared with me a comment posted on her blog (which she'd deleted):

“C isn't special to the rest of the world, he is only special to you. He is a burden to the rest of the world and if he was another part of nature, like an autistic fish for example, would have died long ago. You just use others to keep him alive.
And C is not the kind of high functioning autistic that will ever contribute anything to mankind. But that's okay, if something happens to you they will just control him as they wish with drugs, like you should have allowed them to in the first place. He is not a complete person, he is an autistic that shits all over everything. Get over it.
You made him, put on your big girl panties and deal with it, and stop being so self centered."

Well, that's certainly abusive!
She also makes an interesting comment: 'abuse stems from ignorance.' I wonder about that. I may blog about it later.
Dorry Carr-Harris at the Torontoist discusses an art exhibit about the history of disability discrimination. They presented 13 objects, including a closet with sixteen identical sweatsuits for institution residents to wear, a billboard listing 'four types of mental deficiency' and a bassinet belonging to a 'funny looking kid' who was given a digoxin overdose without her parents' knowledge.
Jeff McNair discusses the horrifying statistics regarding the rate of sexual abuse of developmentally disabled people, and the protective role the Church could serve. He says that ministers should watch out for this, and if they suspect abuse, they should report it. He also discusses the resistance to inclusion that he's encountered when doing activities with developmentally disabled group home residents.
Astrid asks the important question of whether you should pressure disabled children to achieve at a normal level in every area. She discusses reading speed for blind children - Braille readers tend to be slower. Her discussion reminds me of my old post Milestones, in which I argue that a disabled person's achievements should be celebrated based on how hard they were to achieve, rather than undervaluing milestones met later than normal (or overvaluing things which really aren't that hard).
William Peace discusses rich priviledge and a quadriplegic man who can afford state of the art technology and all the best care, and doctors are 'amazed by his progress'. It reminds me of all these people who pay enormous amounts to cure their autistic children, while moaning about the economic burden and ignoring the families just struggling to survive, who have trouble keeping food on the table, much less getting expensive therapies. Another thing I've noticed is the 'perfect lives' phenomenon - if practically everything's gone in your favour for most of your life, as soon as something doesn't, it's an absolute tragedy. The parent quoted in A Work in Progress said that having a developmentally disabled child must be 'every parent's worst nightmare'. Tell that to a refugee mother. Hey, you could even tell that to my mother, who found out her daughter was getting sexually abused in her own home. Clearly, if you think developmental disability is 'every parent's worst nightmare', you have led a sheltered life.
Shiva submitted an excellent post called The Thing Itself is the Abuse, about the common pattern of portraying 'misdiagnosed' people who were abused in a way common for the group they were mistaken as like their treatment would not have been abuse if they really were a member of that group. In my opinion, this is the best post contributed. I was going to give Shiva the blog award I'm supposed to pass on, but xe already got it. I've certainly noticed that as a problem myself. My teachers thought I had ADHD, and treated me badly based on that. Had I really had ADHD, if anything, it would have been worse, because their treatment of me would seem to me to be more 'justified'. In some cases, it is true that the misdiagnosis is the biggest problem (for example, a bipolar child misdiagnosed with ADHD will generally be given medication that is helpful for many ADHDers but induces serious manic symptoms, rapid cycling, and raging in many bipolar people) but it's really important not to assume that, or act as if certain categories of people are okay to abuse.
Knitting Clio posted an entry Good Cause, Bad Idea for Fundraiser about a 'Jail n' Bail' fundraiser for the special olympics. I'm kind of baffled by this. Where did that idea for a fundraiser come from? What did they mean by 'Jail n' Bail'?
Ruth posted about road rage against wheelchair pedestrians, clearly a terrifying situation for the pedestrian. Sometimes I really wonder about people, and road rage is one of those things I don't understand. I actually understand a parent killing their disabled child better than I understand road rage (note: understand is very different from agree).
The Goldfish will be hosting the next Blogging Against Disablism Day on May 1st, and has written a comment about terminology in preparation for it. And the next Disability Blog Carnival will be at cripchick's weblog. The deadline is May 4th, the carnival will be up on May 8th, and the topic is 'Disability Identity' - something I know I will be able to blog insightfully about, as this is an issue I've pondered a lot.
Lastly, I have my own comments. Firstly, I notice that all the posts seem to be primarily about real abuse of disabled people. Although this is an important issue, I'm a bit disappointed that no one discussed the following:

• things wrongly perceived to be abuse of disabled people, such as the belief that denying autistic, ADHD or other disabled children treatment to make them more normal is abuse; the attitude that it's abusive to deliberately have a disabled child, or even not take 'sufficient' measures to prevent their birth; and the assumption that if a disabled woman is pregnant, she must have been raped.
• stereotypes about abuse by disabled people, such as the belief that developmentally disabled men are sexually abusive (because they have 'animal urges' that most of us supress and they don't); the identification of certain disability-related characteristics as indications of a criminal or potential trouble-maker (such as the tale of a bipolar middle-eastern man who was mistaken for a terrorist, or the 'walking while developmentally disabled' crime that Amanda Baggs has gotten in trouble for); or portrayal of simply being exposed to a disabled person as a form of abuse.
• lastly, real abuse by disabled people (especially mentally ill/developmentally disabled abusers), how it is viewed, why they do it, and so on. A certain proportion of abuse survivors go on to perpetuate abuse (such as the autistic mother I heard about with seriously low self esteem who verbally abused her autistic child for being too much like her). Disabled abusers, if they abuse in ways society generally recognizes as wrong, may be more likely to be caught. They are also viewed differently, either as 'can't help it' or as much worse than a non-disabled abuser. And lastly, the existance of disabled abusers feeds into stereotypes regarding disabled people, and is used to justify abusive treatment of disabled people.

Regarding that last category, a study I found recently is relevant. They studied sexual abuse of developmentally disabled people by developmentally disabled or non-disabled men. Firstly, they found that almost half of the reported cases of abuse of a developmentally disabled person involved a disabled abuser. The disabled abusers were more likely to have abused men, more likely to have done sexual touch or masturbation instead of attempted or actual penetration and more likely to have done only a single episode of abuse. All in all, it sounds like they were probably much more often reported. Possible reasons are suggested by the fact that others had witnessed the abuse three times as often if the abuser was disabled, suggesting the disabled abusers were less sneaky when abusing others. Another fact is interesting: though the disabled abusers appear more likely to be identified, they were also much less likely either to be charged or have charges considered. Almost all of the disabled abusers either had no action taken, or in-service action such as warnings to staff working with them, whereas 'only' about 2/3rds of the non-disabled abusers were treated this way.

PS: Laura, the link you sent me seems to be broken, and I couldn't find the post by searching your blog. Sorry.

Post-Psychotic PTSD

I just found an interesting article here. I can't read the full text, but here's the abstract:

"This paper examines the aetiology of postpsychotic posttraumatic stress disorder (PP/PTSD) symptoms in a sample of participants who had been hospitalized following a psychotic episode. Forty two people hospitalized for a psychotic illness were interviewed during recovery to investigate whether a psychotic episode was associated with PTSD symptomatology. All participants found psychosis and hospitalization highly distressing. PP/PTSD symptoms were not associated with demographic factors, previous trauma, treatment, or insight. The PP/PTSD group reported more distress and intrusive memories associated with illness and treatment experiences and had higher scores for anxiety and dissociative symptoms. The development of PP/PTSD phenomenology was associated with the psychological distress of the experience."

Get Nate Home

I found out awhile ago about a boy, Nate Tseglin. What I heard first was that he was a self-injuring autistic boy with a tendency to severe reactions to neuroleptics who was forcibly removed from his parents because they refused to medicate him to treat his self-injury. I assumed originally that he was severely autistic, even though I should know better than to think self-injury only occurs in low functioning autistic kids. In fact, Nate has been diagnosed with Asperger Syndrome.
This threatens me, too. I'm high functioning autistic and I also self-injure, though apparently not as badly as Nate. I also have serious meltdowns which have almost resulted in me being hospitalized a few times.
I know this will sound bad, but I didn't think that much about Nate until I found out he was high functioning. I thought it was a bad thing, but I was safe. But if the wrong thing happens, something similar could happen to me.

An Insight Sadly Ignored

I'm not generally a supporter of Bruno Bettelheim, from what I've heard of him, but recently I found something he wrote that I really wish more people had followed.
In the American Journal of Orthopsychiatry, volume 26(3), pages 507-518, published in 1956, he said:

"All this would be quite easy to see if we would just listen carefully to what the schizophrenic children tell us, at least those who talk. They will let us know readily enough what kind of treatment they need..."

He then describes a case where a 'schizophrenic' girl told Anna Freud, her therapist, that she was a very different person in different situations and therefore Anna Freud really had a very limited understanding of her, seeing her in only one setting. Rather than listen, Anna Freud described it in this way:

"It struck me that here, disguised as a piece of 'technical advice,' we were offered some insight into the basic deficiencies of her ego structure. [and proceeded to give a long and convoluted interpretation which I will not quote here]"

He also has some interesting case studies, showing some issues still around today and probably more ignored now:

"A mother whose schizophrenic child lived at the School had been in prolonged psychoanalytic treatment. She was making good progress, but we felt that her influence on her child was so pernicious that they should remain separated. The mother's analyst thought that the mother needed to test her ability to be a better mother, and supported her in her insistence on a home visit. Reluctantly, we agreed to a visit of two weeks' duration. The child set fire to the parental bedroom while the parents were asleep there. No great damage was done and the parents viewed this as a childish prank. A year later, with the approval of her analyst, the mother again insisted on a visit. We were opposed, because the child, who was functioning quite well within the protected setting of the School, expressed great fear about what might happen on such a visit. Despite our objection the visit took place; then, while with his parents, the child died in a carefully contrived accident."

Murder of disabled children by their parents was certainly present back then. It chills me to think of what it was like for that child - clearly, he knew or suspected they would do something terrible to him. On the other hand, I'm glad that Bruno Bettelheim clearly views the killing of this child as a bad thing.

"Parents considered their boy feebleminded from the moment he was born. Since he supposedly did not understand, they spoke freely of how he ought to be put away, how he should never have been born. Autistic withdrawal led to his being sent to an institution for feebleminded children, where he was badly neglected and where he was often deprived of meals as punishment. This added to his conviction that his parents wished to kill him through starvation. He spent most of his first seven years in phantasies of how he would torture and kill others before they could kill him. (Such phantasies were typical among concentration camp prisoners.)"

This reminds me of Amanda Baggs' description of growing up with the expectation that she'd either be cured or institutionalized.
It saddens me to think that things like this were spoken about in the 1950s, and most people still don't get it. How long will it take before people start listening to us, respecting that we have just as much a right to life as anyone else, and recognizing that we are aware and being spoken in front of with hurtful statements hurts us too?

Expectations and Hope

I'm at a conference about autism right now. Last night, a guest speaker about ABA gave his closing remarks, talking about raising expectations and hope for the future. Listening to him, I realized something. His whole idea of the kind of expectations you could have for an autistic child was fundamentally prejudiced.
There was no possibly of being autistic and living well in his view. The height of progress for an autistic, in his opinion, was when they came closest to the functioning of a neurotypical person. He viewed higher ability to function, as measured by speech, tested IQ, self-care, adult living placement - the usual - as synonymous with being less autistic. There was no place in his view for people like Amanda Baggs, who live well in their own home without testing high functioning on measures like speech and self-care. Or people like me, who are very much autistic but have no trouble speaking, minimal self-care problems, and a high tested IQ.
Contrast that with this quote from A Parents' Guide to Inclusive Education, published by the Saskatchewan Association for Community Living, which was being given out free at the conference.

"Myth #6: 'Your child is not ready to be included.'
Your child cannot 'get ready' to be in a regular classroom by being segregated from it. A child may never reach the 'level' of skill or behave the way that the administration deems as good enough. A child should not be discriminated against for not being the same as another child. Keep fighting for an inclusive placement. Your child has a right to be there."

Once, someone in the Schafer Autism Report said once (paraphrasing, because I can't find the exact quote - here's a reply to it) 'Suppose you were the person who, without treatment, was destined to spend your life banging your head on the walls of an institution, would you want someone speaking for you and counseling against treatment? No, I wouldn't either.' If I was in danger of being institutionalized and couldn't, for whatever reason, fight it myself, I wouldn't want ABA people fighting for me. They'd try to make me prove I'm 'capable enough' to get my rights.
Instead, I'd want the likes of SACL speaking for me. I'd want people who felt I deserved my rights no matter what my level of ability was, who felt that I could live a good life at any level of ability. I'd want people like Cath's mother in Does She Know She's There, who refused to institutionalize her severely disabled daughter when such behavior was standard. I'd want people like Amanda Baggs advocating for me. And (I'm lucky I can say this) I'd want my parents speaking for me, just as they did when my school wanted me to get Ritalin.

How Prison Affects Inmates

I heard a story on CBC recently about long waiting lists for treatment in prison resulting in prisoners having parole delayed or getting let out without any treatment for the problem that made them do the crime. Here's the link. Long waiting lists for treatment is a major issue in Canada and there's a lot of discussion about that, but that's not what my post is about. Here is what my post is about:

"And the longer someone spends in prison, the more difficult it becomes for them to reintegrate into society when released."

Trying not to extend their sentences unnecessarily is only a band-aid solution. We have to look at 'why do lengthy prison stays have this effect?'
The most common explanation I've heard is blaming the other prisoners. The psychological/teacherese term for it is 'association with deviant peers'. For example, a petty criminal gets in jail, and while in there, he befriends a guy who gives him advice to make him a better criminal, or he recruits him for a gang, or something. Or they both hook up when out of jail and get into more trouble together than either would have alone, because they spur each other on.
And that is an important thing to consider, but they're really missing something. Way back in 1971, a psychologist recruited a group of college students for a study. Randomly, he divided them into two groups. One group was informed that they were to be prison guards and told to come to begin work at a specified time. The other group were surprised to find the police come to their doors, looking to arrest them.
They spent only six days in the prison, instead of the planned two weeks. In that time, 5 prisoners, a substantial proportion of them, had serious breakdowns and had to be released, one the day after it started! The rest of them all were seriously disturbed. After only a short time, 6 days at the most, each were profoundly affected by the prison. How would it be if they were in there for 6 months or more? How would it be if the guards had 'self-selected', so those who were most uncomfortable being guards (who'd generally been the nicest ones) were less likely to actually be there?
Why is it that 36 years later, people still don't understand this dynamic? Is it that it's too inconvenient, that recognizing this forces us to ask painful questions about what to do about it? What do we do to deal with criminals? Or to help people who pose a danger to themselves? If we recognize that the system currently in place is unethical and counterproductive, we must think of what to replace it with. And that is a big question, one that no one has an easy answer for, so many people shy away from asking it. But we must ask it, because what we've got now is not working.
PS: The Lucifer Effect, by Philip Zimbardo, was used to help put together this post.

Song About Abusive 'Therapy'

Here's a song I thought up today:

You, who are not good until I fix you
You, who are no one until I make you
I'll make a person, out of your empty shell
Hand over you self, and I'll make you someone

You, who are not fine until I fix you
You, who have no power until I give it
I'll make a person, out of your empty shell
Hand over your power, and I'll make you yourself

I think this expresses a lot of what my teachers thought about me.

Disrespecting Patients

I've read about the ways that 'patients' are disempowered by caregivers, but I don't think I've been on the receiving end of it until recently.
A couple days ago, I had a second asthma attack bad enough for the emergency ward. (I sure hope this doesn't keep on happening.) Anyway, while in the emergency ward I experienced two different kinds of disrespectful treatment, one from a nurse and the other from a doctor.
Firstly, the nurse came up and asked how I was doing. I gasped out 'not very well' and he replied 'nonsense! You're fine!' I tried to explain that I was most definately not OK, but he just continued saying similar things. I understood that he was trying to calm me down, but I found it really disrespectful and patronising to be contradicted about my experience, and it left me feeling really scared that I might not get proper treatment because they might think I was faking it.
After he left, I overheard an interaction between him and another patient which made me realize that rather than just being hypersensitive, I was reacting to a real problem in this man's behavior. He was talking to someone who'd just had a stroke. First he cajoled them to 'give him a smile', and then said 'I knew it was hiding in there somewhere'. Later he said 'come on, big strong girl like you, you can push against my hand'. I found it really offensive how he was treating this other patient, and I would not be surprised if that patient found it demeaning as well.
Awhile later the doctor came. We told him about how I had another asthma attack about a week or two ago and had taken three days of prednisone and been using Symbicort 2-8 times a day (at least 2, more if I had trouble breathing). He first said 'why did you only take three days of prednisone?' in an accusing manner, and later lectured me about overusing the Symbicort, saying I should only take 2 a day. In both cases, I'd been following the doctor's orders - the emergency ward had given me the prednisone and arranged for my regular doctor to see me just as I finished it to decide on a more permanent treatment, and my regular doctor had told me to take the Symbicort at least twice a day and more if needed, but not more than 8 a day. I thought we'd made that pretty clear, but he seemed to think I'd done something wrong.
When he told me what to do (take Symbicort twice a day and use a regular symptomatic as needed), he said I should do as I was told so I wouldn't end up there again, which is pretty ridiculous since I did what the doctors had told me and still ended up in the emergency ward.

An Interesting Book About Helping

I recently got a used book called The Helping Relationship: Process and Skills by Lawrence Brammer. It's got some interesting stuff to say. One thing it says is:

"This voluntary quality of the helping process is a crucial point since many persons wanting to help others actually seek to meet their own unrecognized needs. Some helpers, for example, need 'victims'; the helpers may maintain relationships to satisfy their own affiliative or dominance needs and may even continue their relationship longer than necessary in order to feel needed. Doing anything for other people without their initiative and consent frequently is manipulative and destructive. Even when help is solicited and given with the best of human motives it may have an unplanned detrimental effect on the helpee. The reason is partly that persons being helped experience a loss of self-esteem."

I'd like to know what someone more experiences with receiving services thinks of this quote. It seems to me to describe some things I've heard disability rights people talking about, but I haven't experienced this sort of thing personally.

Even in a Very Simple Life Form Behavioral Analysis is too Simple

I like to play a series of games called Creatures. In these games, you have creatures called norns which you raise. There are also grendels and ettins, which differ mainly in one gene that tells the game what species they're supposed to be. (All examples of specific types of creatures are taken from Creatures 3 and some are not accurate for other versions.)
These creatures have digital DNA and very simple brains capable of learning. You can tickle them to reward them and slap them to punish them.
One example of how behavioral analysis doesn't explain everything is that although slapping a creature in this game is fairly effective in stopping most unwanted behaviors, it increases the tendency to run from whatever they're looking at. That's because they get scared from getting slapped, and run away from things when they are scared.
Another example is that something can have different effects on different creatures. For example, the standard norns, if they eat detritus (rotten food), they get pain, and therefore learn that they shouldn't do that (which is a good idea, because they are poisoned from it. But one type, called Toxic norns, are helped by things that are normally poisonous. Instead of getting pain from eating detritus, their hunger is decreased by it. So a normal norn learns not to eat detritus while a toxic norn learns to eat it, simply because the action has different effects on them. This is genetic.
Also, if you take a newborn normal norn and a newborn toxic norn, who have never before eaten anything, and offer them detritus, the toxic norn is much more likely to eat it. This is because they have instincts for eating detritus. Another example is that the standard grendels have instincts to hit norns (they're supposed to be the 'bad' guys). You can train a grendel not to hit norns, but these instincts will still pop up occasionally, and you'll have to reinforce the lesson. They will never be as safe for norns to be around as if they didn't have those instincts.
Drives are also important. Grendels tend to get angry easily, especially around norns. They will sometimes hit other grendels simply because they are angry and hitting creatures, of any type, reduces anger.
[Edit: On a completely different topic, I found out today that the song Mrs Robinson by Simon and Garfunkel is about an old woman entering a nursing home and how patronising the staff is towards her.]

Psychological Effects of Being a 'Good Patient'

I have a book called Textbook of Social Psychology, and it has some interesting stuff to say about the psychology of being a 'good patient' in a hospital. Here's what it says:

"Patients may be reluctant to disclose information that seems to be trivial; they want to be "good patients" and may feel intimidated by the physician. Indeed, being a "good patient" may be good for the staff but not the patient... While they are well-liked by staff, these patients pay a price:

• Depersonalization, a loss of personal identity; they now assume identity as a medical insurance number or become the "hernia repair in 214A";
• Loss of control, a sense that they must sacrifice the freedom normally expected by adults to a set of institutional rules and professional decisions; and
• Ignorance of matters about which a normal adult would feel a right to know. In some cases, the patient may sink into a state of passive helplessness, which has been linked to depression and to a further erosion of health.

Is the "bad patient" in better shape? Taylor (1979) suggests that being a "bad patient" is a state of psychological reactance, acting in ways to counteract feelings of depersonalization, lost control, being uninformed and helpless... Of course, "bad patients" may also experience adverse effects on their health."

I would really like to hear what people who've been institutionalized think of this. It seems to me that it's even worse for a psychiatric ward to have that effect than if they're being treated for a physical illness, because of the following: a) they are already having trouble psychologically, b) the harm is directly counter to the effect it should have, and c) the system is more expected to understand things like this. And that's even asdsuming the problem is equally bad in physical and mental hospitals. It's probably worse, in fact, because the person is considered to be less capable of understanmding their condition and making good choices.

This is a list of institution-related links I want to print out later. I'm posting them here in case anyone wants to look at them.

http://csindy.com/csindy/2003-07-24/cover.html
About two different disabled children who died due to restraints in the same insztitution. One was Orlena Parker, a depressed 15 year old, and Casey Collier, a 17 year old autistic. Both of them were overweight and held facedown, which is especially risky for people in that weight range.

http://www.caica.org/NEWS%20DEATHS%20Casey1.htm
Another story about Casey Collier's death. Apparently he vomited while restrained, which might have contributed to his death (by reducing air flow). He was also asthmatic. As an asthmatic myself, I know that even just the terror of restraint can cause an asthma attack. Combined with being facedown with someone on top of you, breathing would be very poor.

http://www.isaccorp.org/devereux/devereux-colorado.03.13.03.html
More about Orlena Parker and Casey Collier.

http://www.ualberta.ca/~jpdasddc/abuse/ICAD/digests/restraints.html
A discussion in which people are outraged about restraint deaths, including Casey Collier's death.

http://ballastexistenz.autistics.org/?cat=47
Amanda Bagg's institution entries.

http://www.inclusiondaily.com/news/institutions/nj/bancroft.htm
Stuff about Matthew's Law, a proposed law limiting aversives which is named after an autistic 14 year old, Matthew Goodman, who was killed by restraints.

http://www.judgerc.org/
Judge Rotenberg Center's website. This is a center for people with "behavioral problems" which uses aversives, most well-known of which is electric shock treatments. Some people have died due to these aversives. Others have been traumatized.

http://normemma.com/lcorneli.htm
Information about Linda Cornelison's death. She was a 19 year old, developmentally delayed, nonverbal woman. After being starved for a long time, she started acting ill. She was repeatedly punished for these behaviors, meanwhile nothing was done about her illness. She died of a perforated stomach, thought to be related to starvation. She had extensive ulcxers, which probably caused the perforation.

http://www.nospank.net/jrc-1.htm
A list of links about Judge Rotenberg Center.

http://www.boston.com/news/local/articles/2006/05/22/a_question_of_tough_love_vs_torture/
About Antwone Nicholson, who was traumatised by JRC. Antwone, 17 years old, once said to his mother that she must not love him because she let them hurt him. His mother is now suing the state for sending him there.

http://edwatch.blogspot.com/2006_05_21_edwatch_archive.html
Someone's blog entry about Antwone Nicholson and JRC.

http://www.nospank.net/jrc-2.htm
Another article about JRC, with stuff about Antwone as well as others.

http://www.aspergersexpress.com/restraints_and_aversives.htm
The Asperger's Express opinion statement about restraints and aversives.

http://users.1st.net/cibra
CIBRA stands for Children Injured By Restraints and/or Aversives. It is an organization representing parents who are outraged at how their children were treated.

http://radio.weblogs.com/0119802/
A number of articles about institutional abuse along with comments.

http://www.northjersey.com/page.php?qstr=eXJpcnk3ZjcxN2Y3dnFlZUVFeXkzJmZnYmVsN2Y3dnFlZUVFeXk2Mzc2OTg1
A description of an autistic boy, Nicholas Aquilino, age 13, who was severely traumatised by an institution. He will not leave his house and has been diagnosed with post traumatic stress disorder.

http://www.neurodiversity.com/restraints.html
Neurodiversity.com's list of links about restraints. At the top are links to other relevant link lists.

http://www.winonapost.com/archive/www/041303/1news.html
A story about Bailey Philipps, a 12 year old developmentally delayed, autistic girl who was physically abused in her school.

http://www.geocities.com/growingjoel/iamnot.html
Joel has a list of "I am not" statements such as "I am not an object." A number of them refer to attitudes which are prevalent in institutions.

http://www.prisonexp.org/
An account of the Standford Prison Experiment. In many cases institutions for disabled people are worse that prisons, because disabled people are more devalued.

http://www.feministpeacenetwork.org/survivors.htm
Women survivors of psychiatric abuse talk. Most of them were diagnosed as crazy.

http://www.cchr.org/index.cfm/5353
This is a page for reporting psychiatric abuse. It lists as one of the things "falsely diagnosed". So if you really do have the condition they diagnosed you with, is it not abuse?

http://www.mindfreedom.org/
Mind Freedom is an advocacy group for psychiatric survivors.

http://www.oikos.org/psychabuse.htm
Abuses in a Montreal institution.

http://www.astraeasweb.net/politics/badpsych.shtml
Astraea's page about psychiatric abuse.

If you can suggest more links, please do so.

Being an Ally as Well as a Self-Advocate

I'm writing a book titled Normal Person's Burden, about disability rights. In one chapter, Disabilities and Parenting, I was describing parent allies and quoted a list of "what makes a good ally" that was originally posted by a Domestic Assault Prevention group regarding men, and then modified by Phil Schwarz and used in his conference presentation Indentifying, Educating and Empowering Allies.
As I was quoting this list, I realized that, as a "high functioning" autistic (although the line is blurry, since I'm in between Asperger Syndrome and BAP* I'm definately high functioning) I used those same principles in terms of advocating for "low functioning" autistics (those who are treated by society significantly worse than people like me are because they're more prominently autistic).
Which got me pondering. Generally, the difference between an ally and a self-advocate is that a self-advocate is the target of the kinds of discrimination they are fighting against, whereas an ally isn't. In my case, I've been the target of some of the discrimination I fight, but some aspects of the discrimination I fight are expressly stated not to apply to people like me. I've never been institutionalized, and probably won't ever be, although my flashbacks mean I may be seen as needing institutionalization if it's really bad. If need be, I can pass for normal in most situations, though in group conversations I have to pick between "shy" and "overtalkative". I've never been viewed as unable to speak for myself, except in the same ways NT** kids are. My self-care skills are only mildly impaired, so that with maybe a beeping watch or some more ingrained rituals I should be able to live "independently" with no support staff or government funding (other than maybe student loans and other stuff NTs also get) at some point in my 20s.
All of that means that my experience of disability discrimination is significantly different from that of people such as Amanda Baggs and Cal Montgomery, in the same sort of way that the experience of racism is different between a light-skinned black person who can pass for white and a dark-skinned black person who can't. Which means that in advocating for autistics in general, I am both a self-advocate and an ally/pseudoally.
Laura Tisoncik and Amanda Baggs discussed how never-institutionalized autistics don't understand institutions in their article Conversation on Institutions. From my perspective, reading that, it was similar to how I imagine an NT ally would feel reading about many aspects of discimination against autistics. Basically, I had to recognize that this was an experience I didn't understand, and be willing to listen. All that ally-type stuff. My printout of that article has a note jotted down about whether someone with PTSD*** due to some trauma other than institutionalization would get it if they were staff in an institution. I realize the answer is probably not, though they may grasp some things like hypervigilence if they are open-minded.
Anyway, what I'm trying to say is that I think it's possible to be both a self-advocate and an ally in the same movement, and presumably also possible to be both a self-advocate and a pseudoally. For example, people like Temple Grandin are held up as speaking for all autistics, yet Temple Grandin, for the same reasons as myself, doesn't understand what it's like for "low functioning" autistics.
Anyway, food for thought. I'd like more discussion of this concept.
* BAP - broader autistic phenotype, meaning they have autistic traits but not enough to be considered disabled.
** NT - neurotypical, meaning a person who has brain function close enough to average that society accomodates their kind of mind fairly well.
*** PTSD - post-traumatic stress disorder, a psychiatric diagnosis applied to people who, after a traumatic event, have symptoms such as being easily startled and irritable, re-experiencing emotions or sensations from the trauma, feeling emotionally numb, etc, to a point where it is seriously upsetting and/or interferes with their ability to function.
PS: I'm using "low functioning" mostly as a sociological category, to refer to the autistic people who are targets of certain types of discrimination I (and Temple Grandin, and others) am not a target of.