Being 'Out' Nonverbally

One big concept that the gay community has introduced is 'coming out of the closet'. 'The closet' refers to pretending to be straight, so coming out means admitting that you are gay rather than trying to hide it.
Some people in the disability rights community also discuss coming out - especially people whose disabilities aren't very evident in the situation they are discussing. For example, one book I've heard of (but never actually read, unfortunately) is called Coming Out Asperger. There are differences between coming out for disabled people as opposed to gay people, but there are also similarities.
One issue that some gays have been talking about is when you are 'out' verbally, but still trying not to be too obvious about it. For example, your coworkers may know you are gay, but you don't hug your lover in front of them (in a culture where a straight person might do so).
I can certainly relate to that. Just because someone knows I'm autistic doesn't mean I'll flap in front of them. It's not that unusual for me to tell someone I've only just met that I'm autistic, if it comes up. But only with people I really trust will I actually act autistic (apart from acting intelligent and obsessive).
And this can't be solved just by choosing to be out nonverbally, because there's a difference between forced nonverbal signals and real nonverbal signals. So, for example, that one pro-choice lesbian in Citizen Ruth kissing her partner in front of a bunch of Christian pro-life protesters was forcing nonverbal signals - she wasn't kissing her partner because she just wanted to kiss her, but because she wanted to shock her audience. (Note: even though I'm pro-life, I much preferred the pro-choice characters in that movie.)
But the big problem is that often worrying about your audience inhibits wanting to act the way you naturally do. If you've spent a lifetime hiding, then fear combined with self-consciousness (that feeling that you don't belong) tends to show up in acting 'normal'. So you don't feel like being out nonverbally.
What can be done about it? I'm not sure. One thing that helps is to force those nonverbal signals until they do come naturally in that setting. If it's too scary, work up to it gradually. I've found strangers are easier than acquaintances, because they have very little opportunity to actually hurt me for being different. I've mostly been hurt by social rejection, which can only really occur if you want a relationship with them.
Anyone else have any ideas?

Your Octagon Daughter

You see me staring at your daughter, your octagon daughter, and glare at me. You think I'm looking out of pity, disgust, or morbid curiosity, the way you'd stare at a car crash. Maybe I'm thinking 'poor little thing' or maybe 'why have people like that out in public?' That's what most squares think when they stare at your daughter. That's what you expect them to think.
But my look is not of pity or disgust, but loneliness mixed with joy. I sit there, fighting between my loneliness and my fear of being judged by people who, like me, have been treated harshly by society. Because you can't see it, but actually I'm not a square. I'm a triangle.
And even though triangles and octagons are more different than triangles and squares or octagons and squares, in some way we're alike, your daughter and I. Because when squares are everywhere, and square is treated as the proper way to be, anyone who isn't a square has something in common. We're all considered broken, we're all the exceptions to the rule.
And even you, in your glare, are confirming square rule. Anyone who looks to be a square is assumed to be one. I doubt you even realized I might also be different. After all, my right-angle corner looks like it could be a square's corner. And that's what everyone sees. They expect to see a square, and a square is what they see. Your daughter has no right angles for people to be confused by, but I do.
So I sit, and watch your daughter. And then you glare at me, with that protective glare, and not knowing how to explain, I simply walk away. But I wish there could have been more. I was glad to see that not everyone there were squares, and I wish you could've seen that too. Above all, I wish you hadn't been trained to expect hurtful square looks. Just as I wish I hadn't been trained to expect hurtful square replies.

What's the Point of Inclusion?

If you ask most advocates of including developmentally disabled kids in regular classes why these kids should be included, they'll say it's so the child can be friends with normal children.
But does this actually happen?
In the European Journal of Special Needs Education, volume 19, issue 3, pages 317-330, Monchy et al studied 21 mainstreamed kids with 'behavior problems' - 9 with PDD NOS, 1 with ADHD, 3 with PDD NOS and ADHD, 1 with Tourette Syndrome, 2 with Asperger Syndrome, 1 with Reactive Attachment Disorder, and 4 with no specific diagnosis. They categorized these kids and their classmates as 'popular' (liked by the majority of the class), average, ignored (not liked or disliked by most of the class), controversial (liked by many and disliked by many) and rejected (disliked by most of the class) based on children's nominations of their top 3 favorite and top 3 least favorite classmates.
Among the neurotypical kids, 27% were popular, 31% were average, 18% were ignored, 6% were controversial and 19% were rejected. Among the behaviorally disabled kids, none of them were popular, 8 (38%) were average, 3(14%) were ignored, none were controversial, and 10(48%) were rejected. So in other words, about half of the disabled kids were actively disliked by most of their classmates. Around two-thirds were in the two categories that could be considered 'social failure'.
For mainstreamed kids with Down Syndrome, it was better, but still pretty bad. An earlier article in the same journal as the above one (in volume 14, issue 3, pages 212-220) found using the same method that 17% were popular, 26% were average, 52% were ignored, none were controversial and 4% were rejected. For these kids, a little over half could be considered social failures, although most were not actually disliked.
So, for a normal-looking child with unusual behavior, in a regular class, about half of them will be disliked by most of the kids (and probably bullied), and only about a third will be accepted by their classmates. Down Syndrome kids are actually less likely to be actually disliked than neurotypical kids, but about half of them will have few friends in their class. Even for kids with more 'acceptable' disabilities like Down Syndrome, social failure is quite common.
So what's the point of inclusion? As it is now, inclusion is failing to achieve the primary goal for (assuming these numbers generalize to other conditions) the majority of developmentally disabled kids. Either we need to fix it, or try something else.

Visible and Invisible Disabilities

A commonly described divide among disabled people is between 'visible' and 'invisible' disabilities. The way this difference is described is that some disabled people are readily recognized as disabled, and others can be mistaken for normal.
What many people don't recognize is that you can be invisibly disabled one moment, and visibly disabled the next. It all depends on context.
One way that a normally 'invisibly' disabled person can become visibly disabled is by who they are with. When I was volunteering with an ABA program for autistic kids, I saw one example of this. In one part of the program, there were both autistic and NT kids doing an integrated gym class (this was for the higher functioning kids). Anyway, one kid came out of the gym at the end while I was chatting with one of the therapists, and she greeted him. I knew immediately that he was autistic. Not because of his appearance or behavior, but because of the way she spoke to him. She used the same tone of voice as she did in ABA sessions, just with better grammar.
You can also be visibly disabled by being with other disabled people. In my disabled youth group, when we go on outings, it's evident that at least some of us are disabled. And we are clearly a group, without the kind of divides that often occur between disabled and nondisabled people, so those of us who aren't visibly disabled are assumed to be disabled as well. Note that this can mean mistaking nondisabled people for disabled people. Hearing children of Deaf parents, when out in public with their parents, are often assumed to be deaf because they're signing and with people who may be more obviously deaf. Even though they aren't actually disabled, in that setting they're visibly disabled.
Some people are visibly disabled in certain settings but not in others because those settings involve skills that they lack. Apart from with my disabled youth group, the only times I've been visibly disabled is when I get lost - especially on the bus. I don't know things most people are expected to know. I act more eccentric out of stress. In general, I seem developmentally disabled. Similarly, a dyslexic child in a class discussion may not be visibly disabled, but when reading aloud in class they are.
On the Internet, many 'visibly disabled' people become invisibly disabled. At the same time, although they may not actually be recognized as disabled, some 'invisibly disabled' people become more visibly disabled on the Internet. Higher-level language problems, receptive or expressive, are the most visible disability on the Internet.
This brings me to another point. You can be in between visible and invisible disability. There are certain stereotypes of people that are 'almost' disabled, such as geeks, stupid people, 'wackos', etc, who are generally assumed not to be able to help being like that, but aren't really considered disabled. Some people who actually are disabled are recognized just enough to fall into those categories. Also, some disabled people are mistaken for people who are drunk or high on some substance, such as people with balance problems or people who show visible signs of perceptual abnormalities. Actually, this is among the most obviously disabled you can be without being recognized as disabled.
So it's a whole lot more complex than just visible or invisible disability.

Intellectual or Developmentally Disabled?

A lot of people think that for any one group, there is a single stereotype for them. This is why those stereotyped as 'able disabled' are so often described as 'breaking stereotypes'. They think there is only one 'disability stereotype', at least for any particular disability.
Anyway, one pattern I see often, which is really ironic, is the contrast between the 'intellectual' stereotype and the 'developmentally disabled' stereotype. These are viewed as opposites, complete opposites. This can get really confusing when discussing autistic people, for whom the reality is a mix of those two stereotypes with other traits thrown in.
One scenario is an 'intellectual' parent, who identifies as such, and hopes to have a child like them. They've accepted all the values that serve that stereotype, such as valuing education, dedication, knowing a lot, acting the expert, etc. And then they have a child, who is actually a lot like them, but with many of their traits intensified, and this child gets diagnosed with autism, and considered mid to low functioning. So, like most kids described that way, the focus is all on this child's weaknesses, and they're certainly not considered anything like an intellectual. Their stereotyped as a 'developmentally disabled' person, which is the exact opposite.
So their parent thinks this child is so different from them. They can't understand the child. The child blatantly doesn't show appreciation of all the 'intellectual' values, by acting so disabled and unaware of things. (In reality, they may be very aware and value many of the same things, but this is not seen.) So this parent, who has a view of themselves that focuses very strongly on certain traits and denies other traits, and an opposite view of their child, has a major barrier in accepting and relating to their child, even though they're actually very similar people. In order to value their child while fitting stereotypes, this parent would have to value completely opposite traits to what they've learnt to value in themselves.
Another pattern is a parent of an autistic child stereotyped as 'developmentally disabled', who runs into a person identified as autistic who shows prominent 'intellectual' traits. This may be a higher functioning autistic child, or an autistic self-advocate (especially if they are, in reality, relatively higher functioning). It's especially pronounced if they're a self-advocate or otherwise breaking the 'client' role (eg a helper). The parent immediately thinks 'you're nothing like my child'. Even though, in reality, they may be a lot like that person's child, either having grown and developed since that age, or differing mostly in superficial ways (eg, being better at putting on an NT mask or having better verbal skills).
And then there's the high functioning autistic person, who has been labeled with a developmental disability, but in most people's minds, they're blatantly 'intellectual', which is of course the opposite. So either their disability gets denied completely ('excuse to be a jerk', for example) or they get told that it can only affect them in certain very circumscribed ways, as if they're only autistic when at a party, or when someone flirts with them. And they get denied needed services because they don't fit the model of someone needing those kind of services. And they get overt and covert pressure to play along, to deny their disability and think of themselves as 'not really disabled'.
I'm pretty clearly in this category. As I was growing up, my differences were called giftedness or PTSD. When I first started thinking I was autistic, piles of people said I wasn't. 'There's nothing wrong with you', my father's cousin-in-law said. My mother said much the same thing. And I went on with all the coping skills I'd learnt to deny or disguise my differences, so that I really did act only slightly autistic. But despite them, I resonated so much with descriptions of autism that my self-perception steadily became more autistic.
First I thought I had a lot of 'pseudo-autistic' traits that were really trauma. But, around the same time I started realizing giftedness included a whole lot more than knowing lots of facts, I realized I had a lot of inborn autistic traits, and started calling myself BAP or a 'cousin' (as a gifted person). Then I noticed that BAP people generally were a whole lot better able to fit into society than I did, and that gifted people who felt as different as I did had IQs much higher than me, and most gifted people in the 130-150 range fit in better than I did. And I considered myself 'maybe autistic'. Then I was officially diagnosed PDD NOS, and I knew I was autistic.
But it didn't stop there. At first, I considered myself much higher functioning. But gradually I started realizing that difficulties others had were things I'd been denying and trying to hide, and that things I thought I was high functioning enough to do took much more work than I actually thought, and how blurry those lines really are. And more and more I switched from the 'Geek Syndrome' view (a modified form of the intellectual stereotype) to viewing myself as being a developmentally disabled person as well as an intellectual. At first my identification with developmental disabilities has been in acting lower functioning than I am.
First, I'd play pretend where I was a low functioning autistic person (my mom was uncomfortable about this, thinking I was making fun of them, but I wasn't). When working with developmentally disabled kids, I'd be so focused on them that I forgot myself. It was like reading a book, and the kid was the star character. Then I joined a youth group for developmentally disabled teens, and started acting more obviously autistic when with them, but at first I felt embarrassed to discuss my interests, feeling a bit like a 'fake' because I was so smart in those ways. So I'd stim in front of them and admit when I couldn't do something, but whenever I caught myself chattering about my interests I'd stop.
I'm still switching between 'intellectual' and 'developmentally disabled'. When I'm recognized as disabled in public (not in the form of self-identifying as autistic while being overtly high functioning, but someone actually noticing me having trouble and realizing I'm disabled without me telling them) I don't show them how smart I am. When I've chattered about my interests to a stranger and impressed them with my intelligence, I don't stim in front of them. It's something I've been working on, but only in a few settings can I show both sides of who I am. I'd like to get to the point where those aren't 'different sides' but all together, but I'm not there yet.

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.

Social Identity

The next Disability Blog Carnival theme is 'The Hardest Part'. I was thinking about it, and decided I didn't want to interpret 'hard' as 'difficult', because that's standard. I wanted to do something different.
Bill Choisser has an online book about prosopagnosia here. I found it among my printouts yesterday and was reading it again, and noticed how he describes identity. One aspect he discusses is 'core identity' - cores are generally hard, so that's the connection. Pretty tangential, I know. I like being tangential.
I have a regular pattern of treating whatever I'm reading as if it doesn't relate at all to myself. In fact, I don't tend to have a sense of 'myself' while reading. But when I reread things, sometimes I suddenly start thinking about how they relate to me.
Anyway, I started wondering what my own identity would look like with that model. I'm female, so my personal identity (what you actually are) would be female. I consider myself female, as opposed to being transsexual or genderqueer or something, so my core identity would also be female. But maybe close to the border, because being female is not as significant to my identity as it seems to be for most. My personal identity is in my core identity, because I'm fine with who I am, but maybe towards the border rather than squarely in. Actually, my core identity is probably very small, only slightly bigger than my personal identity, because I consider myself very unique.
Type is acceptable mating partners. Therefore, my 'type' is nonexistant, because I have no interest in sex with anyone. As for my tribe, it's several parts. One is 'developmentally disabled people', another is 'highly-educated intellectuals'. Or no, on reviewing the definition, it's probably only developmentally disabled people, and my immediate family. It crosses both genders. My personal identity is towards the edge of my tribe, and my core identity is half in and half out, because I don't fully feel a part of any group.
My core identity is certainly hard. It's hardened and solidified to stand the assaults my teachers gave to it, as they tried to force it to move. It's the hardest part in this diagram, the part most resistent to change (except maybe personal identity). I mentioned above that my core identity is small, that's because it curled up for protection. It's strong because it had to be.
And another meaning of hard - this was difficult for me, to figure out where these things are positioned. The hardest part to figure out was probably my tribe. I don't have much of a clear idea what that even means.

Is Autism an Invisible Disability?

It's said that autism is an 'invisible disability' because there isn't a distinctive autistic facial appearance, or some easily noticeable aid every (or most) autistics use, or whatever. However, it isn't always.
Firstly, some autistics present as very noticeably odd. Most people can probably tell someone is disabled if they are visibly stimming, have odd movement patterns and do not speak (with the exception of young children). Especially if, like many people who present that way, they have someone with them who is acting very patronizing and staff-like towards them. Some people describe this as 'looking retarded' which is probably what most people tend to think about someone who presents this way. If they can speak, but are doing so oddly, they may be considered retarded or 'crazy'.
Secondly, syndromal autism can be visible in the same way any syndrome is. Many conditions can cause both autism and a distinctive, unusual appearance. Some syndromes cause an appearance that isn't visibly odd, others cause one that is. I have a friend with a kind of syndromal autism, who has an unusual appearance and also walks oddly because of scoliosis and other motor issues. I think he's hypotonic, haven't been told this but he moves like a hypotonic person. Anyway, all those make it that, even if he acted fairly NT (which he doesn't) people would know he wasn't normal.
Lastly, if you know plenty of autistics, you can spot it even in 'mildly autistic' people. When I look at pictures taken of me when I didn't know my dad was taking a picture of me, my autistic mannerisms are fairly visible. The most obvious one, to me, is holding your arms up near your chest. CP people do this too, but it's different with CP - more stiff (I can recognize CP pretty well too). I just find that if I'm not thinking about my posture, very often my hands will be up near my upper body. This is only one example, there are others. It's like recognizing a person from a certain culture by their mannerisms (something I can't do, but lots of people I know can with cultures they are familiar with). My dad has noticed, for example, that Cree people sometimes point with their mouths.

Disabled Boy and Dog Story

There's this 'heartwarming' story circling around, one of those stories people incessantly forward around. I've written about a few of these before, I think.
This one starts with a farmer whose dog has puppies. He puts up a sign 'free puppies'and soon enough, a boy comes over to see the puppies. The man calls them out. The mother comes out, followed by three energetic puppies. Then a fourth puppy comes limping out, noticeably smaller than the other three.The boy says "I want that one." indicating the disabled puppy.
The farmer replies: "You don't want that puppy. That puppy can't run, can't play with you. Get one of the other puppies."
Rolling up a pant leg, the boy shows a leg brace and says: "I don't run too well either. That puppy needs someone who understands."
Clearly, that boy is a wonderful, compassionate boy who empathizes with that puppy. That is what's usually recognized about that story by the people who forward it around. But what about the farmer?
The farmer seems to think that there is only one way to have fun with a puppy, a way that the disabled puppy isn't good at. He seems to think that a puppy who can't run fast is not a puppy an ordinary boy can enjoy. Only a disabled boy who also can't run would want such a puppy.
Imagine how this would feel to the boy. Being told that one puppy is not worth as much as the other puppies because that puppy is different in the same way you are different. No doubt this boy will have been given the message that he is inferior many times, and this is yet another time.
It never stops hurting, though the individual incidents blend together. I was told by many people, directly or indirectly, that I was inferior. My teachers tried to emotionally bully me into conforming, when even if I was willing to conform, I couldn't. Later I had a teacher who I'm beginning to suspect gave me less pressure out of pity and a class full of kids who bullied and/or excluded me constantly. Each incident hurt. They hurt all the more because I was used to being told I was worthless.
I wonder if the farmer's words made the boy even more determined to have that puppy, made him empathize even more with that one puppy. I wonder how that boy felt about revealing his disability to the farmer, about using it to convince the farmer to give him that puppy.I wonder if he felt ashamed of his leg brace, if he, too, thought a boy/puppy who couldn't run fast wasn't as good as one who could.
[Edit: Just as I was saving this, I remembered something else that bothered me about this story. The boy's disability was not immediately apparent, so the farmer assumed he was normal. In talking about the dog, the farmer was speaking as one normal to another, saying things directly that he might have tried to hide from a visibly disabled boy. He assumed that the disabled were the 'other' in that conversation. That, too, hurts. When I'm talking to someone about autism I feel compelled to tell them I'm autistic to keep them from assuming autistics are the other in the conversation. It hurts when they assume I consider myself superior to autistics, when in fact I am one of them.]