A Person Who Doesn't Fit

The next disability blog carnival is 'disability identity'. I thought I could easily write something about this, but actually, it's so pervasive an issue for me that I find it hard to decide on a single post about it. But I'll try.

Who you are and what a person is are interrelated concepts. Most people surmise about others based on themselves, and they describe themselves in comparison with others. One personality questionnaire I took (which oversimplified and was innaccurate in places) described every aspect in which I stood out from the majority significantly as an important part of my personality, because it would be an aspect that others would notice and identify with me. Those are also some of the more salient parts of my own identity (eg introversion and disorganization).
Is it much of a surprise that many disabled people feel identified to a certain extent by their disability? If you are defined as an individual by how you differ from others, and you are prominently different from others in a certain aspect, clearly that aspect will become an important part of your self-definition. Some people fight this, and try not to define themselves by disability, but whenever you are a disabled person among normal people, it is part of your definition.
When talking about disability identity, many people discuss the identity of someone labeled with something. But what if you are not? What if you just notice differences between you and others, that make you stand out from every group you're in, and you have no name for it?
And if you have a label, you might notice more how your differences fit that label, instead of the other differences. I tend to think more about being socially awkward, because that's part of the definition of autism, instead of noticing when I react to social signals others overlook (unless it fits my idea of autism, such as reading autistic people or animals). I had an idea for a study in which I test ADHD kids on their ability to understand silent videos depicting various social interactions. One group of children would be told that ADHD people are said to have good social intuition, and I want to test that, the other group would be told I'm looking for learning disabilities in social interaction, because those are likely to be common in ADHD. In reality, I'd be testing whether the hypothesis they were told affected their performance.
Another thing about labels. Amanda Baggs recently posted a bunch of poems, one of which is called Arbitrary Taxonomy (she asked people to give her a title and she'd write the poem). Here is the poem:

"Authority walked in with his clipboard
We were already here
We knew who we were
But he came in with his clipboard
And his white lab coat
And his official glasses
Told kin we weren’t related
Told strangers we were kin

At first strangers stayed strangers
And kin stayed kin
He shook his head like we’d lost our minds
We told him what he’d told us before
The kin as strangers
The strangers as kin
And with no trace of irony
He praised us for our insight"

Labels identify you as part of a group. But people are diverse, and the labels classify people as if we all fit into subtypes. The potential groupings are many, the labels pick certain ones and elevate them as more important than others. It really is arbitrary, but it can powerfully affect your view of people.

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.

Progressive Coercion

There's a pattern I've noticed recently. People, especially parents or service providers, decide that a certain way of treating disabled people is wrong. They speak out about it. And generally that's a good thing. But then it somehow turns into yet another set of rules of behavior that disabled people are coerced into, even if they resist it.
An example: Awhile ago, some people started saying that treating developmentally disabled people, especially adolescents and adults, as if they're much younger than they are (in aspects that aren't necessary for proper care - ie not including things like changing diapers) is not a good thing. Many developmentally disabled people would agree with this. But somehow, for many service providers and parents, they interpreted this to mean that developmentally disabled people should not be allowed to act in ways considered typical of a much younger child. This led to things such as actively trying to discourage adolescents and adults from playing with dolls or other 'immature' interests and play. And that, like pressuring them to act younger, is oppressive.
Another example: David Hingsburger, in his video The Ethics of Touch, said you shouldn't go around hugging developmentally disabled people that you work with. Which I agree with. But then, in reply to a question about the developmentally disabled people who often initiate hugs, he described a method for training them out of that. Because somehow, they're not allowed to want touch beyond what most people their age do. (My policy is to go by mutual comfort. If they seem to want the touch, and I'm okay with it, then it's fine. This means they either expressly consent to the touch or initiate it. For example, I hug back if they hug me, and sometimes I ask children if I can pick them up and twirl them around.)
The biggest problem with this pattern, in my opinion, is that the focus is still on how the disabled person should behave, what the disabled person should do. And it's still being dictated by nondisabled people. They challenge some specific problem, while ignoring the power dynamic of helper and helped, the controlling others 'for their own good' rather than letting them have freewill and choice. The power dynamic, and the focus on the disabled person as the problem, remains unchanged, meanwhile they get to act like they're all progressive and liberal and helping the cause of disability rights.

Tagging-Type Things

I've been tagged with both a meme and a blog award. Here's the award thingy:

The meme is several categories of 'five things' about myself.

5 things found in your bag:

I don't have one. Some things I've been carrying around lately, however, are:

* A big fat German-English/English-German dictionary

* A printout of Hans Asperger's original article

* A little notebook with an attached pen, mostly containing translations of parts of Asperger's article (using Babelfish and the above-mentioned dictionary)

* A tenth of a yarn blanket, attached to a ball of yarn and a crochet hook

* The Saskatchewan Driver's Handbook - I want my license so I can get this one job in which you look after a developmentally disabled adult during the day, so that after graduation they still have something to keep them busy

None of these are currently with me, however.

5 Favorite things in your room:

I don't exactly have a room anymore, either. I've been sleeping on the couch for several years now. By my couch, my favorite things are:

* Whichever book I'm currently using for bedtime reading - right now, it's Lord of the Silent Kingdom.

* My binders, containing photocopies and printouts of disability and disability rights stuff. There is also a large tupperware container filled with printouts etc, and many strewn on the floor getting clawed by my elderly cat when he really wants to be fed.

* My super-soft blanket. It's not actually warm enough most of the time, so I have it underneath my other blanket. The weight of that blanket also feels nice, it's two layers with stuffing in the middle (can't remember what that's called).

* One of our two cat food bowls is there - I like it mainly because it attracts cats, and then I can pet them as they eat or they decide to cuddle me, since they're there anyway.

* The above-mentioned things I carry around get placed there when I sleep.

* Can't think of anything else. There's a second couch, a stereo, a lamp, etc, but none of them are special to me. Maybe the room itself? I feel safe there, like I can monitor everything in the house while still being a bit out of the way.

5 things you have always wanted to do:

* Turn into a cat. I don't think I'd want to be a cat full-time, but I really want to experience it sometime.

* Just exist, without feeling the need to do anything.

* Be younger - I think ever since I was about 7 or so, I've been wanting to be younger. In a decade or so, it'll be normal (not really, because I want to be a little kid).

* Be a publisher author - technically, I've achieved this already, because I entered a story into a contest and got accepted (will post links once I have them). But I want a full-length book published, and preferably more than one.

* Have a child, especially an autistic child.

5 things you are currently into:

* Playing games on Newgrounds or Kongregate, usually puzzle games, though some of the strategy/defense ones I like as well.

* Researching the history of autism and childhood schizophrenia - as you may have guessed from some of my recent posts.

* Crocheting (see my list of things I carry around).

* Playing Rogue, an old DOS adventure game.

* Petting cats - I've always been into petting cats.

Both of these things require tagging someone, but I don't have the spoons (or thermals) for tagging people. So, for the meme, tag yourself by commenting stating that you want to do it. For the award, I'm not sure. Maybe I'll hand out the award to the best contributions to the Disability Blog Carnival I'm hosting here.

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."

The Up-Coming Disability Blog Carnival Is Here!

Just a brief note. The next Disability Blog Carnival will be here. Deadline for submissions is April 21, the carnival will be put up on April 24. The theme is 'Abuse'. If you scroll down to the very bottom of my blog, you'll find the link for submitting, or you can email me by taking my blog's name (abnormaldiversity) and adding @yahoo.com to it.

Autistic Rebellion in a 1930s German School

I've been trying to translate Hans Asperger's 1944 description of 'autistic personality' from German so I can read it. It's difficult, but already I've discovered interesting things about his first case, Fritz V. In many ways, Fritz V sounds like me, only more autistic. He was a clumsy boy, slow and awkward at self-care skills, but said his first word at 10 months and spoke 'like an older' (I think they mean older child). One big difference between us is his ADHD-like behavior - he was noisy, grabbing everything and interested in everything.
What is most interesting to me is his school problems (if you know German, please tell me if I've mistranslated).

"Er war von der Schule eingewiesen: schon am 1. Tage des Schulbesuches hatte sich gezeigt, dass er 'vollkommen schulunfähig' sei." [The school said he was 'perfectly unteachable' after 1 day of attendance.]

"Von klein auf machte er die ärgsten Erziehunsschwierigkeiten; er fügte sich keinem Befehl, tat einfach, was er wollte, oder das gerade Gegenteil des Befohlenen." [From when he was small, he had behavior problems at school; when given a command, however simple, he would do as he pleased or the opposite of what he was told.]

"'sie reizen ihn nur auf', er wird immer gleich aggressiv, schlägt mit allem zu, was er gerade erreicht, ohne Rücksicht, ob er andere ernstlich gefährdet (einmal mit einem Hammer)" ['he just provokes people', he always became aggressive, had no concern for the safety of others (once with a hammer)]

His school problems are much more severe than mine were, but if I'd been attending a 1930s German school, I'd probably have acted the same way. It sounds like he was in full blown rebellion right from the very first day. The school's comments sound like things my teachers might have said about me. In fact, my teachers actually called me unteachable, though not on my very first day. (My father says "she may be unteachable, but boy can she learn!")
It's odd, I'm noticing something I also saw in Leo Kanner's article - they mention things that I know to be true in autistics I've met, but which are either not thought of nowadays or the opposite is considered typical. Supposedly, Asperger Syndrome kids are usually rulebound and trying to be obediant - their disobediance is due to misunderstanding the command, and they'll often try to enforce the rules on other children. They should do very well in a highly controlled school like the 1930s German schools. I'm not like that, and neither is Fritz V. Like me, Fritz V seems to vehemently resist being controlled.
By the way, once I've finished translating it, I'll put it up on the net. Before then, I might put up a text version of the original, so it's easier to Babelfish it.

PS:
I've translated more of it, and even more than Fritz V, Harro L's reaction to school reminds me of myself:

"Er geht während des Unterrichts aus der Bank, kriecht auf allen Vieren in der Klasse herum." (He leaves his desk during instruction and crawls around on the floor.)

I've never heard of anyone else who did that before! I thought I was the only one!