January 20, 2016

When it is who we are

Posted in Uncategorized tagged , , , at 12:25 am by chavisory

There’s a group of assertions that have become common, among a fraction of parents who, superficially at least, believe themselves to be taking an accepting approach towards their child’s autism or disability.

They’re not necessarily looking for a cure. They’re not subjecting their kids to 40 hours per week of repressive therapy. They’re not bemoaning their grief for the non-autistic child they lost or the tragedy that their family’s life has become.

They’re just really insistent that autism not be allowed to be meaningful to who their child is.

“But it’s not who he is. It’s just something he happens to have.”

“It’s just part of who he is; it’s not all of who he is.”

“It’s part of her but it doesn’t define her.”

“Autism isn’t him, it’s something that happened to him.”

Lately it comes to dominate discussions that aren’t even about person-first vs. identity-first language choices, so fearful is the notion that autism might have any sway in who a child is.

And in some ways, I am more frustrated with this variety of denialism than with the way more openly hateful outlooks of curebie parents. In some ways, I think the parents who far more openly hate their children being autistic are being more honest, as deeply unfortunate as I find their position, than the ones hiding fear and disgust behind “There’s nothing wrong with my child as a person; this is only a thing that they have. It’s not really part of them.”

“It’s not who they are.”

Because that would be the worst thing.

What if it is, though?

What if they can’t meet your demands that they cut themselves off from that much of their psyches? What if they can’t or won’t hack themselves up that way?

As long as it’s not actually who you are, isn’t actually de-stigmatizing.

Just as long as you can let us believe that this isn’t really part of you is not actually acceptance.

Just as long as it doesn’t have real consequences for how you have to live your life.
Just as long as it doesn’t affect you in any significant, unavoidable way.
Just as long as it doesn’t mean anything to you, let alone anything good.

Just as long as it’s fundamentally separate from you.

If it kind of sounds like “Love the sinner, hate the sin,” that’s because it kind of feels like it, too.

Being forced to hold something true and essential about you at arm’s length for years and years, being told that you’re not really the person you are, that the real you, the correct you, is someone who doesn’t move through the world the way that you do…that you are not really like this, it’s just something that you have….

(Let me tell you something about trying to do this. The horrible part isn’t that it can’t work; it’s that it can, for some amount of time, anyway. The result isn’t a person who isn’t autistic, it’s a person who feels like a stranger or a ghost in their own life.)

As long as your whole experience of the world—the way language and emotion, music and light, passion and movement, space and time work—isn’t really innately woven into who you are…

It’s a variant, not a repudiation, of who you are is not acceptable. You’re only a person if you aren’t like this.

“But it’s not who he is.”

How would you know? (How good were your parents at reading your mind, at knowing how you truly and deeply felt about yourself as a child? How right were your parents about who you’d grow up to be? How psychic about these things are parents, generally speaking?) Would she tell you? Would she have the words to? What expectation have you given her about how you’ll react if she comes to you and says “Yes, it really is?” Have you exposed him to the diversity of first-person viewpoints that would allow him to know one way or the other? Is he allowed access to autistic people who describe their own experiences in various ways? Different autistic people do have different conceptions of what autism is to them. Most say that it is part of who we are, but some don’t; the point is that we all, individually, have the right to make those judgments about our experiences and internal lives and descriptive preferences. Do your children not have the same right to conceive of who they are or aren’t for themselves?

What if it actually is? What are you going to do then?

Advertisements

June 19, 2015

On collecting labels

Posted in Marginalization tagged , , , , , at 2:43 pm by chavisory

The inspiration for this post emerged somewhat tangentially to an incident on Twitter several months ago, in which a pair of parent bloggers decided that publicly posting sensitive and humiliating information about their autistic teenager was a great thing to do for awareness. Plenty of other people wrote or responded to the inciting incident, so I don’t really feel the need to address it much further.

But something else happened in the aftermath that I actually do think deserves to be talked about more.  It’s not even really about autism or disability itself as much as it’s about language deprivation and identity and the denial of minority experiences as genuine.

In a comment on one of the early Facebook threads about this particular series of Twitter posts, I said to this couple, “You need to read up on what exposure anxiety is, and what its effects are.”  (Exposure anxiety isn’t even the central subject of this post, although I do recommend everyone to read about what it is.)

They said that they weren’t interested in anything I had to say. Nothing new. But a couple of other people were, and there was a conversation about what exposure anxiety is and why it matters. One friend said yes, that makes so much sense as to why the kids she teaches are often able to do some things but not others even though they seem closely related. One friend of a friend said “Holy cow, there’s a word for that?? That’s really a thing?!” and started a Facebook discussion herself about having been so glad to find this out.

And it was not very long at all before someone was accusing her in comments of “collecting labels.”

This is a really, really common accusation against people with a diagnosis of some kind. That we’re just “collecting labels,” “collecting diagnoses,” and “identifying too much with a diagnosis,” closely related to “using it as a crutch,” or in contrast to the ideal of someone who “doesn’t let their disability define them!”

But listen, people who make this accusation? People who don’t understand, because you’ve always just felt like a normal person?

You also go through life collecting labels. You also have a whole collection of terminology and shortcuts and vocabulary for thinking about how you work and things affect you.

The difference is, you grow up with a common language for common experiences with the people around you, for the most part. We don’t. We grow up often in a void of knowledge and vocabulary for how stuff works for people like us, and often deliberately deprived of it. (When parents decide to just never tell a kid about their disabilities? That’s what they’re doing.)

We try and try and try to make the language that we have available fit our experiences, trying to meld and forge and hammer language around experiences it wasn’t built for. Or we try to shoehorn our experiences into the language available.

It never, ever quite works, and the cognitive dissonance can tear you to shreds, or leave you feeling unreal in your own life, or like you’re kind of always walking through the world as a ghost.

Or you start making up your own language for things just to have a reference point if only to yourself. (In many instances, I’ve seen it turn out that different autistic people have come up with almost exactly the same language for a certain thing, almost or totally in isolation from each other. Or that even if I didn’t come up with the language, I’ll hear a phrase or piece of terminology and know exactly what it means, the first time I’ve ever heard it, because it describes so well, so intuitively, something that I’ve never been able to.)

I think you don’t actually do less label-collecting than we do, you just get to do it in a way that’s taken for granted as normal, from a much earlier age. I mean, unless you just don’t use descriptive phrases for the things in your life or the experiences you have in common with other people, or what your problems or weaknesses are, that help make sense of those things to you. Do you use any kind of shorthand language to describe your needs usefully to both yourself and others in a way that makes it more likely that you will be able to find some kind of solution or assistance?

That is what gets us told not to “use it as a crutch.”

Your right to learn how to apply language to your experiences is taken for granted, because your experiences are largely taken for granted as real. (The core belief, at the basis of most prejudice about disability, is that it is fake.)

Typically developing kids are widely regarded as having this right. Disabled kids, queer kids, kids who are atypical or exceptional in some other way, are not widely regarded as having this right.

We tend to be much older by the time this starts happening for us in a meaningful way, or by the time the crazy patchwork of scattered fragments of information starts looking like a coherent understanding of why everything is different for us.

Of course we’re thrilled when we start encountering explanations for our experiences that are more accurate, and useful, than stupid, lazy, rude, psycho, freak, immature, dumbass, selfish, stuck-up, incompetent….

Because for as much as some people have a problem with us collecting labels, they don’t seem to have such an issue with giving them to us. It’s almost like their problem isn’t with people having labels, it’s with their own inability to accept that any experience of the world is genuinely different than their own and warrants different methods of coping.

Or that for once they aren’t in control of what other people get called or whether our experiences are taken seriously.

I mean, try picking one thing about yourself, one thing you know intimately from long-term personal acquaintance, either positive or negative or just important, that’s really important to your ability to understand yourself and make sense of how the world works for you. Try imagining that you don’t know any words for that thing, and you never have. And then you find some.

In that moment—spoiler alert—you feel like the richest person on earth. You’re rendered speechless with astonishment, or you want to whoop with the thrill of recognition.

And then someone comes along and goes “Ugh, you’re just collecting labels.”

December 15, 2014

Self-knowledge and invisible identities

Posted in Uncategorized tagged , , , , , , at 5:10 pm by chavisory

This post actually started on Tumblr in a discussion of The Hunger Games and the various interpretations and identities that people project onto Katniss, and carried over into a question of how people of the demisexual/gray-ace spectrum can accurately perceive other people’s levels of sexual attraction and where they as individuals fall on that scale, which I wanted to expand on a little bit.

Obviously, we can’t ever know fully and objectively what is in another person’s head or internal experiences. So how can demi or gray-ace people know that we’re different, and that we aren’t just arbitrarily deciding that we’re different?

Conveniently, there is already a whole body of writing and experience from another population of people who have had the experience of knowing that they were different somehow, in frequently invisible, subjective ways, often in the complete absence of having been explicitly told so or possessing any language to describe how or why—indeed, often even in the face of other people relentlessly insisting on the contrary—and turning out to be right–

Most autistic people who were diagnosed later…say, after age 18…talk about having always or almost always known that they were different, whether or not they could effectively describe how they were different or how they knew.

A while back now on Tumblr, a parent who was considering the best way and time to talk to her kid about his diagnosis, asked the autism tag approximately when people knew somehow that we were different from our peers.  Not necessarily when we knew our diagnosis, but when we felt or knew we were different. Self-reports ranged from ages 3-10.

This is actually one of the earliest realizations about myself in relation to people around me of which I even have explicit memory (I was about 3).

But how can we really know that other people don’t (for the most part) share our sensory reactions, our cognitive differences, our difficulty with speech and language?

Well, we have pattern recognition. Most people don’t walk around acting or speaking as if they share those experiences on a pretty consistent, everyday basis.  Our reactions make sense to our experience of the world. Other people punish and shame and decide horrible and untrue things about us on the basis of those reactions. Disabled and neurodivergent advocates have amassed decades’ worth of writing, media, and activism at this point in an attempt to convince parents and professionals that we aren’t just broken, we’re operating in a hostile environment, and most of them still don’t believe us.

There is a burden of evidence, at some point, that becomes overwhelming, that other people are not experiencing the world like you do. Other people aren’t just hostile to the way we react to the world, they’re often baffled.

Unless I’m supposed to believe that the non-autistic 98% of the population has just happened to build a culture, educational system, and set of social and employment expectations that is just as torturous and awkward for them, but they’re all just pretending that it’s more or less tolerable and manageable?  And they overwhelmingly do this without ever being instructed to?  Or that somewhere between 1-2% of us simply missed out on this instruction?  And that most other people really do have the same level of difficulty and discomfort, but we’re the only ones not pretending otherwise, at devastating cost to ourselves?

(And yes, there are people who do go a very long time pretending that things aren’t that difficult for them.  The stress of which causes midlife burnouts.  If not young adult burnouts.  Which again, we don’t see masses of non-autistic people having.)

Likewise, there is a point at which the overwhelming amount of information available to me about how most people interact and live their lives, does not suggest that demisexual or ace spectrum people aren’t really having experiences fairly different from other people’s.

The alternative explanation I’m left with is that both autistic people, and demisexual/gray-ace people, are just the only ones being honest about our experiences, and everyone else is lying all the time, in such a way as to make the world really painful and difficult for themselves, and everyone knows that that’s true except us.

Which still would not explain the downright confusion and bafflement that I’ve gotten, not just in relationships but in health and sex-ed classes, from teachers, when the whole set of expectations from other people regarding sexual relationships does not match up to mine, in a “looking in a mirror and seeing nothing” kind of way.  I could imagine an entire set of societal and relationship expectations being built on a lie, and authority figures or romantic partners expressing displeasure when I defy expectations to uphold the lie, but not just confusion.

Are the vast majority of people just pretending to be deeply confused about how the interplay of emotion, physical comfort, and sexual attraction works for them?

Or when people go “Ha ha, you’re not different, you’re just like everyone else.  Everyone feels like [total distortion of what I even just described].”

You know how obnoxious it is when non-autistic parents go “We’re all a little autistic!  Everyone is on the spectrum!” Because no, they’re not.  I did not grow up feeling inhuman because 98% of the population is really just like me.

Likewise, I have a hard time buying that 98% or more of the human population is really just like me with regards to comfort and emotional needs in relation to sexuality, but are pretending not to be to the extent that I can’t even take part because it just doesn’t even make sense to my most basic physical experience.  And that really I’ve spent this long feeling this incompletely human and left out and lonely because I just didn’t realize that everyone else is lying really, really well about their most basic experiences of physicality and attraction?

You see how that strains credibility?

(I don’t actually think that’s true; I don’t think that badly of either non-autistic or non-demisexual people.)

Would you tell a gay person “No, you’re not really different, that’s really how everyone is.  How do you know that it isn’t?”

Demisexuality is a difference not necessarily in who you’re attracted to along the gender spectrum, but in how attraction works. In some way, shape or form, either a strong emotional bond has to precede sexual attraction, or emotional attraction is prerequisite to sexual attraction.

We walk around every single day of our lives, for decades on end, seeing and hearing messages that attraction works, or at least is supposed to, in a way that it actually doesn’t work for us.  You notice after a while.  You notice that you don’t feel and react in the ways that other people act like you’re supposed to.

Or, if everybody else is really lying in countless, tiny, casual, everyday ways about what attraction is like for them, and not only lying, but living out their lives as if something that isn’t true, is true…to the detriment of their own happiness, comfort, and quality of relationships, and that’s the only reason why people like me think we’re different….maybe they should stop.

Or else stop telling me that I can’t accurate perceive that what I’m experiencing is qualitatively different from what I’m being pretty consistently told that other people do.

Maybe then we’d also have an honest, accurate view of the true scope of human sexual and emotional diversity and no one would have to feel inhuman or alone or wind up thinking that they’re just not capable of having relationships.  But then what do I know?