The lies we tell

Recently the New York Times posted an article titled The Kids Who Beat Autism. (Predictably, ASAN is questioning both the possibility of ‘recovery’ and the desirability of it.) I’ve mentioned before how I felt lied to as a child by the idea that the best way to make friends is to “just be yourself”, and this story and the reaction to it highlights why.

See, “just be yourself” is good advice–you can’t make a true friendship if you’re pretending to be someone you’re not, and self-acceptance is healthier than self-loathing. And I’m sure that all the people who give such advice truly mean it. Culturally, though, it only seems to be held as good advice for people who are sufficiently normal, which would also be the group of people least needing such reassurances. For those of us who are too different, that’s not how it seems to work. Instead those differences become something to label, treat, fix so that we can be more like other people. We get told to be ourselves just as much as anyone else–but the way we’re treated tells us that being who we are is not acceptable.

There are times when differences do need to be addressed because they are causing problems in our lives. The question, though, is what is the best way to temper or eliminate those challenges. Sometimes the work is something we have to do ourselves. Sometimes, the work is best shared or done at a structural or cultural level–it is far more reasonable to install a ramp than to ask a wheelchair user to navigate a flight of stairs, for example. And sometimes the only challenge is that those differences highlight that we are different. A lot has been said in the autism community about attempts to eliminate stimming, which frequently causes no problems other than the fact that other people notice and are uncomfortable with it. Or (lack of) eye contact, which is a very culture-specific demand to begin with. Why should anything be done about something so superficial? The problem is that often most or all of the work is demanded to be dealt with at the individual level, putting all the onus on the person who already has it hardest and sometimes bringing no benefit to that person at a personal cost.

As a culture we talk a lot about being tolerant of individual differences. In practice though, difference is often considered unacceptable. Instead of asking people who are struggling to spend precious effort on being “normal”, how much better would things be if we were actually as accepting of difference as we say we should be?

Insert Picard facepalm meme here

This is getting way too predictable. Guy shoots people, concerns about mental illness start cropping up. Repeat after me: The mentally ill are no more likely to be violent than the general population.

What really gets me about this one, though, is the utter lack of evidence that the guy is mentally ill. His family mentions him as being ‘troubled’…but what does that even mean? It’s way too vague a term to tell us anything. There’s no indication that he was being treated for anything (in all fairness, as an adult that ball was entirely in his court, so if he didn’t want help he didn’t have to get any). There’s no comment about him having been violent in any way before this. The most of substance that is said in the article is that he stopped going to church a few years ago. Which, like the ‘troubled’ comment above, tells us absolutely nothing. Lots of people stop attending services all the time, and it doesn’t really mean anything more than they decided they didn’t want to go anymore. Heck, I didn’t go in college only because I couldn’t be bothered to go off campus for it. He had the choice whether or not to attend, he chose not to, for reasons that we can only guess at. I remember learning that to be news, something had to be ‘significant, interesting, and new’. I’d say this article only passes the last of those, because it doesn’t have enough substance to it to be significant or interesting.

The other thing that drives me nuts about this is that it highlights genuine issues with the worst possible light. Yes, there’s an issue with stigma about being mentally ill. Yes, this makes it harder to convince people who need help to get it. Yes, we need to deal with that. But bringing those issues up in the context to trying to prevent an event like this one really doesn’t help. It just reinforces the idea that being mentally ill makes people dangerous, which will make people less likely to admit to themselves, much less others, that they are sick, which will make it harder to get people the help they need for their own sakes. Can we stop framing this as something that’s needed to stop violence and just deal with it as an issue that needs to be addressed for the sake of helping sick people?

Locking the fire escape

I’d like to start with some apologies for being MIA for the last few months–I’ve been rather distracted and said distraction still only naps irregularly. But it’s long past time I got back to my own irregular schedule of blog posts, and I’ve decided to do so by sharing an idea I first shared on Love Joy Feminism. That idea is one I call “locking the fire escape”.

I spend a good amount of time reading both LJF and No Longer Quivering, both of which frequently critique facets of conservative Christian culture in the USA, and regardless of the particular issue there’s a recurring pattern to the materials they talk about–one where a person will acknowledge a problem, maybe even say that something needs to be done about it, but everything else ze says renders that acknowledgement completely worthless. One great example in Michael Pearl’s Book To Train Up A Child*. Michael is very quick to say that parents should not be abusive, that they need to show love to their children, but his directions for raising them is very absolutist. Spank early, spank for any sign of ‘rebellion’ (which can be as simple as not being sufficiently happy), and don’t let up until the child has truly submitted to your authority. There’s no room for individual judgement about when to stop, and the methods he promotes are themselves abusive–even occasionally fatal–which makes his admonishments to not abuse your children ring very hollow.

Michael’s wife, Debi, has her own book about being a wife called Created To Be His Helpmeet, which can be summarized as always submit to your husband and never, ever speak even the slightest utterance against his character or authority. Since even she can’t deny that some men are abusive partners, there is of course the disclaimer that a women may leave (though not divorce) her husband if he is truly abusive. Of course, you can only really be sure that he’s abusive if you’re being a perfectly submissive wife–otherwise he may just not be treating you well because you’re not being good enough. The problems of victim-blaming aside, there will always be room to think that you could be more submissive, so you can never really get past the point of trying to be a better wife to decide that yeah, the problem actually is him.

To move away from the Pearls, Karen Campbell at That Mom is ready to admit that there are problems with abuse among homeschoolers. But like many homeschooling parents, she is even readier to dismiss the notion that this should be addressed by any sort of government oversight. Instead she advocates for the homeschool community to self-police, which is absolutely useless to children who are completely isolated from the outside world, who belong to communities that endorse the treatment they’re receiving (such as those that follow the methods outlined by Michael Pearl), or whose communities lack any way to effectively police their members–that last group would probably cover the vast majority of homeschoolers, since parents rarely have any real authority over other parents.

This is a pattern that repeats very frequently in these circles. They note genuine problems that are leveled at them, and pay lip service to fixing them, but the rest of what they have to say pretty much cuts off that attempt at dealing with the issues at hand. Which is why I refer to it as “locking the fire escape”. The door has to be there, and they will point it out to make sure you know it’s there, but they’re never really going to let you use it.

*If anyone has a copy they’d like to get rid of, my niece’s birthday is coming up and I bet she’d enjoy a pinata.

Undervaluing the feminine

The view that computers are technology but sewing isn’t is a sexist stitch-up, via The Guardian.

I think the article suffers a bit from using a more academic definition of ‘technology’ than is generally used–while I don’t think many would argue that a sewing machine is technology, sewing itself probably wouldn’t fall under most people’s definitions. Beyond that, though, it does make a good point that those skills assigned to ‘female’ activities are generally not as valued as those assigned to ‘male’ ones, even when they’re similar skills. I especially like the anecdote comparing welding to icing a cake. The author found them to be very similar skill sets…yet how many people would consider them to be of comparable difficulty?

It’s kind of weird, because feminine skills are often seen as being ‘easy’, and thus aren’t valued, but even our humour tends to tacitly acknowledge that they are indeed skills, something learned. How many commercials, cartoons, etc. have used the trope of the man who is helpless in the kitchen, or cleaning the house, or any other feminine chore? Just as women have long been dissuaded from learning ‘male’ skillsets, so have men been dissuaded from leaning ‘female’ ones–a man trying to sew a shirt for the first time would probably be just as lost as a woman trying to change the oil in her car for the first time. Yet when women lack ‘male’ skills, it is seen as a sign of inferiority. When men lack ‘female’ ones, it isn’t. Sometimes, it’s even a badge of pride to be so inept at such ‘easy’ chores. If they’re so easy, why is it funny when men struggle with them, rather than sad?

N is for Not Thinking

University is back in session for the 2013-2014 school year, and apparently some students can’t make it through frosh week without being stunningly offensive. Which is bad enough coming from random students, but worse when it comes from the student president.

It’s a pretty common line to get hurled at feminists, especially in discussions of rape culture, to say that not all men are rapists. But stuff like this is why that doesn’t matter, because men who aren’t rapists are still quite capable of legitimizing sexual assault through other means. Now, I can believe the guy when he says that he never really thought that much about the words before, but the fact that he and other students were saying them matters more than whether or not he meant to say “raping drunk teens is good”. What we say and hear has an effect on how we think, and this chant is a pretty blatant example of rape culture to boot. I can’t get past the fourth line of it–“N is for no consent”–and I’m not sure what is the more disturbing aspect of this incident–students repeating this chant for years without realizing that hey, this is endorses rape, or that someone came up with it in the first place. When we talk about rape culture, we’re not just talking about people raping, or sexual harassment. We’re talking about this kind of unthinking parroting of ‘edgy’ material that some people find funny and others find frightening. I have my own twisted sense of humour, but this goes beyond funny for me because this kind of stuff actually happens. Regularly. It is taking horrible experiences that too many people have to deal with and making light of it. As a bonding mechanism, no less.

In a startling contrast, just a few days earlier and a few miles away, rival Dalhousie University posted an anti-rape video (Two, actually).

SMU, you lost this round badly.

Missing the point

I finally got around to reading The Panic Virus by Seth Mnookin last week. It’s a pretty good roadmap of how we got where we are, from the crude beginnings of deliberate infection to today’s controversies. There were a couple quotes that really stood out to me, though, and struck me as examples of taking things for granted.

From page 19–“And because I live in a country where the norm is vaccine, I can delay my vaccines.” In short, I don’t have to because everyone else does.

At an individual level, this is fairly true because of herd immunity–the more people who are vaccinated, the harder it is to spread, giving protection even to those who haven’t gotten vaccinated. A single person delaying or skipping a shot isn’t likely to seriously affect anything. The problem is when those individual choices add up. It’s kind of like voting–a single person’s choice isn’t going to really affect the outcome most of the time, but it’s the aggregate of everyone’s individual choices that determine the outcome. It would be like not voting because your riding is ‘safe’ for your preferred candidate. If enough people come to that conclusion, then ze might not get enough votes to win even though ze is who most people want to win.

The second quote comes near the end of the book, on page 273–“I believe our nation can tolerate a certain percentage of unvaccinated children without risking the overall public health in any significant way.”

Sadly, this second quote comes not from a random parent, but from one Dr. Sears, who has written several books, including The Vaccine Book: Making the Right Decision for Your Child where he promotes an alternative schedule. In other words, this quote comes from someone people listen to. While again, his statement is true, it’s missing the point somewhat. He’s not able to determine which children will or will not get their shots on the recommended schedule on a large scale (which would at least let him control the uptake rate to keep uptake high enough to protect herd immunity), but he IS able to affect choices on the individual level, which is the more dangerous one for him to be influencing because of how the aggregate of those individual choices can drop the uptake rate until outbreaks can happen.

Both of these quotes count on a high rate of vaccination to justify delaying shots–others use the same reasoning to opt out entirely. And the more people who follow this train of thought, the less true it becomes. It’s a self-defeating prophesy.

Intimate knowledge

Ever feel like your life is being appropriated for someone else’s agenda?

I’ve been involved in a conversation elsewhere about whether or not to vaccinate your children, and–big surprise–the conversation turned towards autism and vaccines. I kind of knew that it would be a bit of a trainwreck going in, but vaccination is important to me as a community health issue, so it was hard for me to stay out of it. As things became more and more autism related, a couple things happened, both of which struck me as being on some level fundamentally wrong.

1) As things became more and more autism-centered, I felt less and less like I should be contributing to the conversation. Let’s let that sink in for a moment–I felt out of place participating in a conversation that was partly about people like me. It’s hard for me to really pin down why that happened–maybe because I’m fairly mildly affected, maybe because I didn’t feel I’d be listened to, maybe because I didn’t want to have to drop the information that I’m on the spectrum because I didn’t think it’s truly relevant to the argument–but the fact that it happened at all bugs me.

2) A person on the other side commented that ze typically would asked people if they knew a child with autism before getting into the conversation, saying that ze wasn’t interested if you didn’t have ‘intimate knowledge’ of the condition. While I will acknowledge that this person is more familiar with it than most people, it was the term ‘intimate’ that bugged me. I’m on the spectrum–I live with it in a way more intimate than this person possibly can, and it felt like ze was appropriating an experience that isn’t truly hirs. And it struck me as one of the ways that autistic people, particularly adults, are frequently de-centralised from conversations about autism. There’s a lot of stories from the perspectives of parents and caregivers talking about the struggles they’ve dealt with, how hard it is to have a family member with autism, and I don’t want to discount that it does profoundly affect their lives. But there are far fewer stories that look at what it’s like to be autistic, and when someone does try to get inside of that experience it tends to be in a fairly clinical way, not from a perspective of personal experience. It’s largely the families of autistics who drive the conversation, making autistics themselves secondary characters to the stories of their own lives.

I also noted that the person used the word ‘child’, not ‘person’. Since the conversation tends to be driven by parents, it tends to be centered on issues about how to help children, since that’s their particular concern–sadly, this isn’t confined to the autism community but extends other disability communities as well. While there’s been some advances in developing programs to help children transition into adulthood, there really isn’t much out there once you’re past school age, and those transitional programs aren’t helpful if you’re already an adult when you get diagnosed. Being diagnosed has been helpful in connecting me to a community about people like me, and I try to contribute by relating my experiences, hoping to help improve the lives of those behind me. It doesn’t feel like much, and I often wish I could do more. It’s hard to feel too guilty about doing so little, though, because the truth is that the community offers me even less in return. Autistic children tend to get de-centralised from the conversation, but autistic adults are almost entirely invisible.

If I can’t fit in in spaces that concern people like myself, where can I belong?


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