Sunday, September 30, 2012

Scare Tactics: Divide and Conquer

A friend of mine wrote a post about her journey from cure to acceptance that TPGA posted a couple of weeks ago, one of the people who commented on her post, said she'd "recovered" her child who was now, 5 years later, indistinguishable from their peers and then said, "I chose to fight, you chose "acceptance". This is not an uncommon remark. I've heard it said in various ways and of course the implication is that those who "choose" acceptance have not fought hard enough or we too would have "recovered" children and that those who do "recover" their children have a stronger love than those who do not. This kind of language is not only confusing to new parents (and old) but it is hurtful on so many levels, not just to the parents, but their children who will carry that hurt well into adulthood. Parents turning on one another in this kind of adult version of Lord of the Flies makes MY teeth hurt! And we wonder why children bully (another topic!)

One other thing I just want to mention is that the way Autism is currently perceived, as a tragedy, as frightening etc, also encourages parents to entertain their worst fears for their children. This is something I grappled with for YEARS. I was led to believe (and I know I am not alone in this) that if I didn't try every treatment option out there, when I died my child would end up in an institution. This may sound ridiculous, overly dramatic, even hyperbolic to many reading this, but I can tell you honestly this thought, this horrifying fear plagued me for years. 

It isn't hyperbolic. The medical model history of treating parents to a giant dog-and-pony show about how horrible your child's life will be (and by extension, what an unspeakably evil person you are) if you don't give a good number of them a lot of money and stat! is relatively recent, but very potent, and very deliberate. Several lines of professional activity have been built on its foundation, and, believe it or not, I believe a great many of the mid- and lower echelon practitioners really believe they are helping your child by emotionally manipulating you: they have been taught that way themselves, and emotionally and intellectually manipulated along similar lines. I also believe there are some very unscrupulous happenings happening, and people who by the light of ordinary morality ought to have trouble being around themselves.  In other words, there are some people doing that manipulating who know they are doing it and are blame-worthy.  This is not a conspiracy theory, by the way; it is simply enculturation.

I saw the thread with the comment you're talking about, and it breaks my heart.  It's a clear example of some of the fallout that happens when society makes parenting into a zero-sum competition.  Also, it indicates to me that at some level people are aware they are being sold a bill of goods, or they would not feel the need to scream so loudly at others who are not buying.  There are certain things I like to do with my kids, but I don't feel like less of a person if I don't strong-arm you into doing the exact same things, and validating me while you are at it.  But this may also be because I am sort of a watcher on the sidelines of a dominant culture where this seems to be done with almost everything.  Do you have the right car? Clothes? Shoes? Children?

No? Then you're not good enough.  Now, give me some money and lots of it, and let me make you feel like more of a person for a second.  (Maybe I'm saying this because I made it up and I am an evil manipulator, or maybe more likely because I am a True Believer who drives that car and wears those shoes and now that I get calls from the creditors all the time I need to know I made the right choice...)  Well, it could be for some other reason.  But the reasons I have listed are frequently-occurring and interesting studies back them up, particularly the latter (cognitive dissonance and Concorde fallacy studies, for example).  However, the fact that the Normalcy of Your Child is part of What Makes You A Person and is decided by Medicine and Psychology is what I am really talking about and saying is relatively recent, historically.

Prior to the medical model of emotionally manipulating parents into bullying one another, it was basically left almost entirely up to religious organizations (I'll talk about the Western world here, for time/space/complexity/parallelism considerations) to manipulate parents into bullying one another by intoning that their disabled children were already some kind of punishment and that things would be somewhat forgiven if large donations were to be made to said religious organization and/or the other villagers did bad things to the family showing lack of allegiance... This model prevailed for hundreds of years and--I could hardly believe my eyes when I saw this for myself just the other day--still has a few conceptual adherents.  So, in the old days before Medicine decided who counts as a person and how, Religion decided who counts as a person and how.  Is this right?

Fortunately, both models have been widely ignored by groups of cool people. We have some evidence that in many places, villagers frequently overlooked such teachings and inclusively considered "simpletons" and other people with disabilities to be full fledged members of the community, particularly as they were able carry out some role figured out for them for the group as making sense, such as courier, or bouncer, or farm hand. (The language does not always seem to have carried the same aesthetic.) Today, many parents reject the ethos of the medical model and use medicine for what it is good for: ameliorating symptoms of illness, getting people well from actual diseases and things like that, instead of deciding to agree that entire ways of being "Other" should be branded as sicknesses that need to be cured out of existence.

It is currently considered gauche for adults to bully children (though some inexplicably do it anyway). This may be why they bully each other so readily. When a child with disabilities grows up, it is a good idea for him or her to be prepared to take on this bullying, denial of basic rights, dehumanization, etc. As a parent, it is a good idea to give your children self-advocacy skills with all your might, which includes modeling them yourself. Don't let yourself be bullied. If you need help from the Autistic Community, give us a shout-out, and we will have your back.

My favorite books about the above are Foucault's Birth of the Clinic and James Trent's Inventing the Feeble Mind.  Recommended reading!

I mention these and wrote this whole answer (then decided to add to it and repost for all, in case people don't see in-comment conversations) as another way of saying that these lies have been going on for ages; and I especially want to announce with vigor and gusto that parents have more power than they think, and I love it when they use it against wrongness in the establishment instead of against each other.

Parents and "Others," Unite!



  1. I hear you. I refuse to call myself a "warrior mom" because this warring is used to go beyond "taking on the system" to "taking on the disease aka autism that's right we have a full blown war going on in autism don't you know we have to fight if you truly love your children." It is the same fundamentalist mentality as believing that if you love your child enough, autism should never wear you down or make you feel exhausted or give you feelings of hurt and pain (yes I have actually read a parent post something like this and I had a hissy fit of rage).

    I'll be honest: I don't hear this said to me (i.e. "if you aren't fighting, you're giving up on your kid.") Not yet, at least. Maybe it's because people don't say it to me, those who have seen how "hard" I've advocated and the inroads we've made as a family, and they are thus far satisfied with their perception of my efforts. Maybe it's because I try to stay away from talking about "the future" of my child and especially "the function" of my child, which I think is stress I don't need, and honestly a topic that is not my right. My kid's future is not a matter of speculation and anything I say really is just that -- speculation. As for "functioning" -- don't even go there!

    I have this fantasy of taking my kid back to the early intervention program he graduated from, when he's all grown, and tell the new parents there something like this: "My advice for parents? All road to success begins with intense EI -- and I'm talking about Embracing Identity not Early Intervention. Total Acceptance of who your child IS... not who he can be or could have been." Well... a girl can fantasize.

    Here's the irony. I am choosing not to go to these "alumni" meetings when the set-up is aimed to give parents "hope of how your kid can be", when the model IS limited primarily to one appearance of existence (those who are card carrying members of the "Pass Privilege" as Autistic Hoya blog describes.) If an autistic adult who types of keyboard to communicate shows up as a guest alumni, you bet I'm going: this is the other side of "balance" we parents get enough of. It's one of the reasons why becoming familiar with the adult autistic community has eliminated much of my "fear of unknown". This fear feeds into how we're brainwashed: if we don't do X-Y-Z within a certain time frame, ALL IS LOST OMYGOSH.

  2. Dear Jane, You are cool. I'm glad you found us. :) Ib

    1. I agree, Jane IS cool. That was awesome! As was this post. I really really really enjoyed "However, the fact that the Normalcy of Your Child is part of What Makes You A Person and is decided by Medicine and Psychology is what I am really talking about and saying is relatively recent, historically." I think it made my day! :)

    2. Yay! You just made my day saying that! :)