Over the weekend Sweet M's school had their annual carnival fundraiser. This year the sensory attractions were particularly appealing, and Sweet M was in vestibular heaven, especially in this "atomic g-force" machine.Feeling the force of gravity — the dive of a roller coaster or the spinning of a carnival ride — provides some of her greatest pleasures.
I was unprepared for the gravity of the responses to my post on Autism Every Day, and am thinking deeply about it, while recovering from the psychic whiplash that it generated.
Our alliances may be far more fragile than I realized if they are threatened by the centrifugal force of one person's spin.
Keywords: autism • Asperger's Syndrome • ADHD • learning disabilities • special education • obsessive-compulsive disorder (OCD) • parenting • family life
10 comments:
Just the same with Charlie whose biggest delight is the Sea Dragon and the Paraglider.
Our children ground us while us requiring us to move in different cosmoi.
So true.
Many people have very strong feelings about child murder and about language that might be interpreted as excusing it. That doesn't have anything to do with alliances or the strength or fragility thereof.
There was a similar discussion among the commenters on my blog.
It's not personal.
I didn't see any fragility in discussions on this matter -- what I saw was people interpreting something (The Video) differently and attempting to explain their interpretations to others.
In some ways, I think that voicing disagreement (or attempting to figure out if a disagreement even exists) is actually the sign of a stronger alliance, or at least greater potential for all involved in a discussion to learn something.
And as a side note, your blog here is absolutely nothing like The Video. Your entries are balanced and realistic. I agree that maybe videos or PSAs about autism could be helpful -- but I think it would be better to offer parents something more realistic and in which children are respected, rather than being called "heartbreaking" and possible impetus for murder-suicide, and followed around with cameras while they're already upset.
It's not the concept of decribing life with an autistic child that is problematic, or parents discussing their experiences, that I take issue with -- it's when this demonstration becomes dangerously unbalanced.
I really do hope I am not making you feel worse by commenting like this and that you are able to get through whatever fallout (another war-word, I know) you might be experiencing.
Zilari, I think you're probably right that a passionate discussion may be the sign of an even stronger community.
The fragility I speak about is my own, evidenced by the fact that for the first time ever there was a post on my site that I felt compelled to remove because it crossed the line of what I consider to be civility in its sarcasm, and its use of my daughter as the vehicle for that sarcasm.
I don't want my blog to be a site for hate speech of any kind, no matter how committed I am to freedom of expression.
I guess I remain convinced that there is a difference between saying
"I was in such despair over the school that I saw suggested for my child that I contemplated ending our lives" (what the blonde woman in the video said)
and saying that autistic children should be murdered.
I think those are different communications.
I think it is more dangerous to prohibit people from sharing their despair (and suicidal ideation) than to listen to it with compassion.
I say this a person who has lost three family members (one of them a sibling) to suicide.
If I thought the film were saying that autistic children should be murdered, I would have had a different reaction, no matter how much I empathized with what the mothers were saying.
However in all of this I can see that other viewers of the film empathized more strongly with the children in the room, children whom -- we all agree -- should not have been in the room when their mothers are speaking about them as "heartbreaking," or robbed ("so much has been taken from him") or as objects of suicidal-homocidal ideation.
Still, I am concerned about making autism moms the object of our rage when there are other institutional and structural forces that are more powerful, and better targeted.
I worry that we're going from refrigerator mom thesis (intelligent, "cold" moms as cause of autism) of the 50s to homocidal mom thesis (that autism moms who share their despair about the paucity of resources available for their children are doing their children irreparable damage.)
To my mind, the paucity of resouces of all kinds is the problem. The moms' despair is a symptom.
But then it is clear that I speak from the position of the mother's voice. I don't -- can't -- presume to speak from the position of an autistic person. Of course these positions are not mutually exclusive, but in my own case they happen to not be overlapping.
Thanks for your kind words about my blog. I try to represent the life of my family as accurately as I can, and try to imagine Sweet M's subjectivity without presuming to know it.
I find it... really disturbing... when people compare the "refrigerator mother" theory, which was not based on the real actions of mothers, to people criticizing specific actions of mothers that are common and reinforced by certain parts of the autism community.
There's a difference between a theory of autism's origins as being through mothers, and looking at the sociological trends in a community that's mostly mothers (or mostly representing themselves as mothers, even if fathers are involved). One is false, the other is looking at something real and thinking about it.
I mean, it's kind of the difference between... let's see here.
On the one hand, a theory that says that women cause men irreparable damage by having long hair.
And on the other hand, noticing that a lot of women in a particular society have long hair.
Long hair is a more neutral characteristic than is being described, but I still think it's equivalent here. There's "Parents of autistic children cause their children to be autistic because they do not show enough love for them," and then there's "There's a lot of parents out there who are doing really bad things to their children and forming groups that reinforce these really bad things."
Serious difference there, and I find the refrigerator mother comparison to merely make real discussion impossible because it in turn characterizes the people discussing it, as being potentially like Bettelheim.
I also wanted to mention, I have been suicidal before, but I have never wanted to take anyone out with me. There's a real difference between being suicidal and wanting to kill other people, and I find it telling that the only daughter she wanted to kill was her autistic one, not her non-autistic one.
Looking back over the responses to your (Mothersvox) previous post, I cannot find anything that looks even remotely like sarcasm, or any case of using your daughter as a vehicle. (In fact, I'm not really even sure what that means).
To me, this indicates that either the commenter you are referring to was using sarcasm far too subtle for me to pick up on (a possibility, since I am admittedly quite literal and not at all prone to "reading into things"), or that the person you're referring to (and I don't know who it is) did not intend sarcasm or the using of anyone at all.
In short, a misunderstanding is much more likely than any sort of intentional nastiness or lack of civility. I have been mistaken for rude or sarcastic on many, many occasions and it was never intentional.
I also know that at times I have actually been chastised for taking people's suicide or death threats seriously and panicking or getting other people involved -- when it turns out that the person was really using these terms as some sort of metaphor or a means to make a point that had nothing to do with reality or their actual intentions.
It actually amazes me how many people are so flippant (not you) about making such statements -- I had a roommate in college who talked constantly about wanting to jump off the roof, and this was pretty terrifying to hear, even when I found out (after confronting her) that all she'd really meant was, "I'm in a bad mood".
There was no way for me to gauge whether she was serious or not, and it seemed like it would be idiotic of me to just assume she didn't mean anything actually suicidal with her suicidal ideation.
It's possible that this mother in the video never, ever had the most remote intention of doing what she discussed. It's possible that all she was doing was using metaphor, albeit very dark metaphor. It's possible that she was anticipating that other parents would understand this for what it was.
But some of us are taking her words at face value and perceiving them as very dangerous indeed. And they might very well be dangerous. And even when someone is "venting" they need to be cogent of what they are saying and the beliefs that underlie their words. There are some things that are too serious to be used in jest or even as metaphor.
There is a reason why people can't get onto a plane and talk about how they've often thought of hijacking the plane, killing the pilot, and taking everyone down with them -- even if they are joking, even if they are using their words as a metaphor to express some sort of deep hurt or frustration.
People still err on the side of caution in that case, and though some may indeed argue that this is a hindrance of freedom to speak, the chance of there being dire consequences for assuming metaphor, lack of seriousness, or lack of true intent is too great to risk.
There are plenty of ways to express frustration, pain, and to call for support and education that I agree is sorely lacking. Making dangerous statements -- the sorts of things that would get a person escorted off a plane by security if you were to say them about the pilot -- is not only unwise but unnecessary.
And I haven't seen anyone suggest that the mother in the video be locked up or have violence done to her (and even if someone has said this, I wouldn't agree with it -- this is not about revenge or being vindictive, it's about trying to save the lives of children).
All I've seen is people suggesting that other people should think carefully about what they are saying, who is present, and what assumptions they are making about their child's capacity for understanding -- as well as the potential ramifications of what they say.
Zilari, You don't see the post because I deleted it. It's the first time I've ever had to delete a comment from this blog.
PS I'll respond more fully to your thoughtful comments tomorrow.
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