Today is Autistics Speaking Day. To follow in the tradition of last year, I'm going to take the opportunity to talk about something that I wouldn't normally blog about. Be forewarned that this is not -- at all -- a pleasant topic. In fact, it's downright disturbing. If you are a parent to an autistic child, this will be particularly disturbing to you. If you are autistic yourself, it will be equally disturbing in a completely different way. Be forewarned.
During that exchange, a lot of issues -- many of which are very important -- relating to the parent/self-advocate divide in the modern autism world were discussed. By and large, the parents present were interested in helping their child and were willing to respect and try to understand the viewpoints and interests of autistic people. And, while I can't directly confirm this, I strongly suspect (and have no reason to disbelieve) that those parents love their children and wanted to do what they could to help them. I believe (and have no reason to disbelieve) that, to those parents, their involvement in autism issues was not primarily about themselves or their personal interests and desires, but rather about trying to raise their children.
One fact, however, was not mentioned during that dialogue, and it's a simple fact that while the above can almost certainly be said about the parents who participated in the Dialogues, it certainly cannot be said about all parents. Put another way, not every parent of an autistic child is a good parent.
"Good" and "bad" are relative, of course, and everyone makes mistakes. I'm not trying to demonize or stereotype the parents of autistic children here.
Still, there's an attitude among parents' groups characterized by the presumption that each parent loves their child and is generally trying to raise their child as best they can. There are three real problems with this -- and I've already discussed the first one. Specifically, parents are human and thus fallible. Even if a parent is trying to raise their child as best they can, this doesn't mean that they are.
The second problem with that presumption is far simpler. It simply isn't true.
I know I've repeated myself here. This was deliberate. The point needs to be driven in -- preferably with a metaphorical sledgehammer.
For years, I've been reading coverage of parents doing truly awful things to their children. Take for instance, Marguerite Famolare, as quoted in this article about the Judge Rotenberg Center. According to her, the center's systematic torture of her child is great -- after all, if she shows him the remote control to his shock harness:
He'll automatically comply to whatever my signal command may be, whether it is 'Put on your seatbelt,' or 'Hand me that apple,' or 'Sit appropriately and eat your food,'" she says. "It's made him a human being, a civilized human being.
I have to rather strongly disagree with her definition of humanity. Beyond this, I think that the quote speaks for itself.
Then there's the case of Karen McCarron, who I recently learned is trying to appeal her well-deserved sentence and get a new trial. Her story is, in a way, much simpler to explain -- she murdered her daughter and blamed her actions on said child's reified neurology. According to her lawyer, McCarron believed that Jesus would bring her child back, sans certain reified aspects of how she learned and experienced the world.
I did not select these two cases at random. While I could have picked from a lot more, including many not on that list (which is rather outdated at this point), they serve as illustrations of the fact that there are some phenomenally bad parents out there. Some of said parents have autistic children.
More importantly, however, they serve to illustrate another factor -- the ways in which certain attitudes prevalent in the autism world can be used as justifications for truly monstrous acts towards autistic people. When I object to, for instance, the reification of autism, I am doing so for damned good reason. When I talk about psychosocial stigma, I am not talking about something even remotely close to trivial.
Finally, these cases are public -- they have public documentation which I can link to. Trust me, I have a lot of examples from personal experience. I've spent a surprisingly large amount of my professional life trying to clean up the messes that bad parents and poor parenting decisions (of various sorts) have left behind.
The third problem with the attitude I referenced is central to the attitude itself and not the underlying beliefs. There is an old saying that "sympathy for the guilty is treason to the innocent." The saying -- and the underlying meaning behind it -- apply here. Yes, parents of autistic children often function without adequate support, are stressed, are under incredible pressures, etc. If, however, we choose to allow this to detract even one iota from our condemnation of this sort of parent's inexcusable actions, if we say that Karen McCaron's actions were "really about a lack of support" or some such, we are essentially arguing that the act of torturing or murdering an innocent child is excusable.
I disagree with this in the strongest terms possible.
Such actions need to be condemned. We, as a community, owe that duty to Karen McCaron's and Marguerite Famolare's victims.
I have, at this point, been writing this blog entry all day -- essentially dropping everything else in my life to do so. It is, however, phenomenally difficult for me to do so. As I type this sentence, it is 6:17 in the evening. I have been writing this almost since I finished breakfast.
As the amount of time I've spent on this text implies, this is not an easy topic for me to write about. I don't even like to think about parents such as those two. I originally intended to write far more about them than I did... but gave up on several (actually rather important) points simply because I couldn't bring myself to write them. In fact, I even dropped one major and prominent example of bad parenting from my list -- simply because I didn't think I could stand writing out another paragraph detailing such behavior. I know for a fact that I will regret that decision.
I would love to think that every parent was a good one, that (all) parents could be trusted to act in their child's best interests, and that we could count on parental love to ensure that our parents would be our allies.
Unfortunately, I know all too well that this is simply not true.
Thank you for having the courage to write about such things - they do need to not only be written about, but also discussed and acknowledged by the broader community. I know this was not an easy post to write, which is another reason to thank you for it.
ReplyDeleteI too was horrified at that JRC mother's statement - I think my thought was, "that is not a 'civilized human,' that is a scared and scarred 'trained seal' and one day I hope he is free of the JRC and you and may then be able to heal and free himself of his past."
The other case, I remember at the time getting into an argument with a friend (who is also Autistic) because he was taking the approach that she just needed more support. I won't rehash the argument here because I am sure you can imagine it. But my thinking basically comes down to, "How do we support people who have to deal with such horrible parenting - and how do we get others to acknowledge it when some of our own people would seem to prefer to explain it away?"
I think the reasons for that are complex, varied, and troublesome. But that is part of one thing I think will emerge as one of the more important things to come out of ASDay - and why it's so important, which is what I plan to write my post on - except I have had a large headache most of the day and am only now getting to a place to write coherently.
Again, thank you, and I hope you will be able to write the rest of what you wanted to write at some point. Bravo!
It's why I think you shouldn't get a free pass into the autistic community just because you have an autistic child.
ReplyDeleteWe threw these excuses for murder out a long time ago - at least insofar as murdering 'normal' adults and children. There are always other options than killing your child. At one emergency department a few years ago a woman walked in with 18 month twins, said to the triage nurse 'I can't cope. It's this or I'll kill them' and walked away, leaving them there.
I can accept that you can be stressed beyond endurance by a child, but surely handing them over to someone else is a better answer?
I think these cases touch on another hidden aspect of parenting: the parent who hates their child. Somehow 'I hated her so I killed her' doesn't seem to be considered an explanation, but it seems to fit the events very well indeed.
More on parenting at my place:
http://autistwriter.wordpress.com/2011/10/31/parental-concerns/
I have worked in ED for many years..seen abuse from many angles.The parent financially abused,the child taken `care of` for financial gain...regardless of their mental ability.I have seen people at their wits end,and as I gathered up their child,their infirm parent,they were overwhelmingly grateful.For those of us who have a grounded and solid approach to life,I would say,read Atticus,from To kill a mockingbird.Walk a mile in my shoes....Fact is,abuse happens.Its sad,its resulted in death and suffering,but are we really in a position to judge?? I am in no way condoning it,I am just askin each of us to look a bit more closely at what we have and what we can offer.Sometimes the safest path is to leave the thing you love the most.
ReplyDeleteAnonymous,
ReplyDeleteWhen we fail to condemn attitudes such as these, we encourage them. It's really that simple.