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