9:14pm May 17, 2014

There’s a difference in philosophy, sometimes.

I apologize in advance for how long this is. I wouldn’t be able to read it, myself. I often can’t read what I can write. But I can’t make things concise, it’s part of my language problems. So anyway…

I’m going to use mental age as an example.

DD people, regardless of diagnosis or IQ, are generally subjected to this idea that we are eternal children. We are not ever truly adults, we have ‘the mind of a child’, or 'the emotional development of a toddler’, or 'the cognitive functioning of an infant’, or something like this.

This originated in IQ tests, where mental age was an abstract concept, and that’s all it was ever supposed to be. You had your chronological age, which is how old you are physically. And then you had your mental age, which was the age an average person would be who got the same score as you did on the IQ test. And you divided one by the other and multiplied by 100 to get your IQ.

But the idea spread beyond IQ tests, and spread to actually mean that a person was a child for all kinds of purposes. Including legal purposes. And it spread to things like emotional age, and all these other ages that basically make DD people of all sorts supposedly children or even infants regardless of our actual lifespan and life experiences. All because of this outdated abstract idea about test scores.

These days the idea that we have the 'mind of a child’, things like that, is firmly embedded in Western culture. And most DD people – the overwhelming majority – are mad as hell about this. We do not like being considered children in adult bodies, and we do not like the social, legal, and physical consequences of not being considered adults.

But some people don’t see it that way.

Some people see the problem not as the idea of mental age itself, but what mental age means.

Some people think it’s totally okay to say someone has the mind of a child, and that the only problem is how we view people with the minds of children. That basically we aren’t real adults but the fact that we aren’t real adults shouldn’t matter. We aren’t real adults but we shouldn’t be discriminated against for not being real adults.

Some people also think that those of us who insist we are really adults, are somehow 'throwing under the bus’ all the people who really aren’t real adults. That by distancing ourselves from the stereotype, we are making the stereotype real.

And sometimes that happens.

I can’t count the number of times, when dealing with disability stereotypes or something, that I’ve heard people distance themselves from a stereotype by saying that nobody who fits the stereotype exists, or that those who fit the stereotype shouldn’t matter. And I’m someone in that case who absolutely does fit the stereotype and I get quite offended by people who want to basically erase my existence.

In the world of mental age stereotypes, this takes a weird form. It’s not so much that I believe any adult DD person is really a child inside. But there’s a thing that happens that’s horrible.

There was a very popular movement called Normalization, in the world of DD staff. And what would happen, was that the staff would come into the home of a DD person. And they would say, “You’re an adult now. Nobody will treat you like an adult unless you act like I believe an adult should act.”

They would take away people’s toys, games, and books, if they were deemed “not age appropriate”. They would destroy people’s doll collections, remove their comic books, remove any art that didn’t look “adult” enough due to motor coordination issues, basically steal and destroy people’s shit and call it progress because it was “making people more normalized in an adult role” and all kinds of other bullshit.

And the thing is, if you’re not DD, you can get away with doing “child” things. My collection of children’s books and young adult novels would not be out of place in the home of a nondisabled nerd of a certain sort. But because I have a developmental disability, I am vulnerable to service agencies deciding that my reading material isn’t adult enough and taking it away from me. It hasn’t happened, but not because of anything special about me.

Because of this, a lot of DD people have become very sensitive to the idea of 'age appropriateness’ and really hate it. But to most of us, there’s no contradiction between hating the tyranny of 'age appropriate’ while at the same time hating the tyranny of 'you’re really a child inside’. These things aren’t in opposition to each other. They’re both messed up things that miss the mark entirely.

But the response of some advocates has been to say, “So actually, DD people really are children inside. And that’s okay! We should just be okay with the fact that they’re children in adult bodies. We should give them all the respect that children in adult bodies need. We should not deny them rights because they are children in adult bodies. But they are children in adult bodies, or at least some of them are. And if you object to the idea of mental age, then you’re just ignoring reality and you’re hurting people who really need people to understand that they’re really their mental age, not their chronological age.”

And I can’t say I don’t understand where that comes from.

But I also have to say, that’s some serious freeze-dried bullshit.

There are not just two ways to respond to a stereotype.

And sometimes nobody fits a stereotype. Sometimes a stereotype is just something that someone came up with as an abstract idea, that has become intensified to the point where people believe it as literal concrete fact. And while I’ve known plenty of DD people (myself firmly, firmly included in this area) who do things as adults that normally only children do, this does not make us in any way children and there is absolutely no need to se us as in any way children, in order to respect our rights.

Some people respond to that by saying “But what’s wrong with being a child?”

Nothing’s wrong with being a child. But I’m not a child. And adults differ from children in important ways. And DD people are seriously harmed by being considered children. We are harmed in two big ways by being considered children. One way really is that we treat children badly in this society so DD adults attract the same bad treatment children get, and that’s something that can be addressed by addressing how we treat children. But the other thing, which is huge, is that we are not children, we are different from children, and adults need to be treated differently from children, and this problem will not go awayjust by treating children better and pretending that DD adults are actually children inside. Infantilizing adults is never okay, no matter what you think about the treatment of children in general.

Oh I should also note it’s not just DD adults who get this treatment. Adults with dementia are also often treated as if they have the mental age of a child. And also adults with other adult-onset cognitive disabilities. But also DD people whether our disabilities are cognitive or physical we get it all the time.

So there are not just two ways to deal with this.

You don’t have to pick and choose between:

1. Total denial of any and all childlike characteristics in DD adults.

2. Total acceptance of the idea that DD adults are actually, mentally or emotionally, children, and that this is okay, and that the problem is how we treat children, not how we infantilize adults.

These are not the only two options.

There are, in fact, lots of options that are not these.

I picked this topic because it’s extremely cut and dried – mental age is false. No matter how you slice it, no matter who you look at, no matter what “childlike” things we may do, DD adults are adults. (And it’s a serious double standard to say that because some of us do childlike things then we’re mentally children, when nondisabled people get to do childlike things all the time without that threat hanging over their heads.)

But there are situations that can be much more confusing, because there will be people who seem to fit a stereotype, and denying the stereotype really can in some cases be more like denying the existence of certain people.

And that’s what someone thought I was doing recently.

I wasn’t.

But that’s what they thought I was doing.

They thought I was saying that there are no autistic people who, by virtue of autism, are extremely oriented towards themselves. Or that such people didn’t count, or didn’t matter, in my world.

What I actually said was that the difference between autistic and nonautistic people is not that autistic people are oriented towards ourselves and nonautistic people are oriented towards others.

I still like the way Donna Williams describes things as far as succinctness goes. Autism can create a state of no self, no other. It can create a state of all self, no other. It can create a state of all other, no self. And it can create any combination of those things. Plus some autistic people can experience both self and other simultaneously.

But that right there tells you that you can't define nonautistic people as oriented more towards others than autistic people are. Like that can’t be the defining characteristic. Lots of nonautistic people are highly self-centered, lots of autistic people are so other-centered that they can’t even perceive their selves at all. So I was saying, you can’t say autistic vs nonautistic = self vs other oriented. Because it’s just not true.

The fact that you can’t do that, says nothing bad about autistic people who really are stuck in a mode where all they can perceive is themselves, and they can’t perceive other people, or can only unconsciously perceive other people. It just says that this isn’t the definition of what makes autistic people autistic and nonautistic people nonautistic.

But also there’s another thing that happens extremely frequently, that makes me furious.

Which is that many, many autistic people are simply assumed to be wholly focused on themselves, living in their own worlds, totally cut off from awareness of other people.

And time and time again, it’s been shown that this is a wrong and damaging assumption a huge percentage of the time.

Autistic people who have had that assumed of us are justifiably angry about it. I’ve experienced it and it’s horrible. But I haven’t had the experience, common to many people, where they grew up being considered that, day in and day, out, for their entire lives. Where they had to spend their entire childhood fighting for a voice to say “I understand other people exist, I am not trapped in my own world.”

And it’s extremely offensive to me that people would take that anger, that anger that comes from direct experience of a horrible misunderstanding, and tell people who’ve experienced this, “You’re just trying to throw under the bus the people who really are self-oriented and trapped in their own world.”

Because for the most part? That is not what is happening. At all. Not when it comes from people who’ve had any sort of experience of actually, in the real world, being considered unaware of everything. Most of the time, that’s genuine righteous anger and it should not be stifled in the name of being inclusive to those who just happen to fit the exact stereotypes that we’ve been trying for some chunk of our lives to get away from.

I used to get very mad at this one autistic woman because she had not ever had the experience of being stereotyped in that manner. But she embraced every autism stereotype out there. She told anyone that would listen that she was actually mentally only a toddler, that she was sick of being treated as an adult, and her dream was to live in the kind of institution that most of us have spent our entire lives trying to stay out of. Any negative stereotype was something she embraced wholeheartedly as applying to herself, and the worst part was that none of those stereotypes actually applied to her, she just said they did because it felt good to her to be treated as a child who had no responsibilities in the world other than to be taken care of. She lied constantly about her IQ scores in order to get a lower 'mental age’. It really pissed me off because she’d walk into a room full of self-advocates who had been struggling their whole lives to get away from that stuff, and then disparage them for not embracing these stereotypes that she’d never had to live with herself.

It’s easy to say you want to live as if you’re a child the rest of your life, when you’ve never been treated like one for real. It’s easy to say you want the loving care and supervision that only an institution can provide, when you’ve never seen the inside of one. And she’d run around telling people that other DD people were simply “in denial” about the fact that they were really children. And people who didn’t know better, believed her.

When it comes to autism and relationship to self, I think that autism makes your relationship to yourself and others complicated. It can reduce awareness of yourself, or it can reduce awareness of others, it can reduce awareness of both at once. That’s not the same as “autistic people are self-oriented and allistic people are other-oriented”. I find the generalization offensive in the extreme, and not because “there’s something wrong with being self-oriented”. It’s a matter of an assumption being so completely out of left field that it’s not even wrong, it’s just something that doesn’t map to reality at all, and that causes a lot of grief for autistic people when these assumptions are applied to us.

So it is offensive to me to say that autism means being self-centered.

But not because there’s something wrong with autistic people whose autism makes them lose track of others.

Because the connotations are simply radically different, and only words make them even remotely the same.

And because it’s a false generalization.

And because it is like a giant eraser rubbing out all the autistic and nonautistic people that the generalization doesn’t apply to. Which is actually all of us, in the end. Even the ones who, if you go by words alone, the generalization seems to apply to.

I understand, though.

I understand what it’s like to hear people saying “But autistic people aren’t like that” when they really mean “But your kind of autistic person doesn’t really exist and/or shouldn’t matter and/or should be swept under the rug.”

But that’s not what I’m doing.

I hope I’ve explained well enough what I am doing, because I feel like at this point I’m stuck in words and talking around the topic rather than describing the meaning itself.

So I’m going to stop here.

One of the best things I have ever heard was the phrase, “the freedom to say neither/nor”.

Because that’s where all the truth in the world lies. All of it.

Outside of the two sides. Not in between, not “the truth is always somewhere in the middle” (which is just a thinly veiled way of saying there’s two sides). Outside entirely of the system that the two sides create.

I may not have the truth, nobody always has the truth, but I know that the truth is almost never in either of the two sides, or anywhere on the path between them.