Due to transportation difficulties I actually only was there for half an hour or 45 minutes at the end. (They ran out of fliers!) And at the end Ari Ne'eman asked us all to post something about the event, and I spent the past few weeks thinking about what to say. Because you know, I came in at the end and all. Well, I just spent a heck of a lot of time organizing some of the tags over on asperger
(we'd run out of tags because we were tagging entries by username, so I neatly deleted all those and set up a new system which is alphabetical in nature, but I had to go retag all the previously tagged-by-username entries), and you know, there's a lot of good posts there languishing in obscurity, some of which made me realize I do know exactly what I want to say!
It's not strictly speaking on the protest, which I feel slightly guilty about, but it's inspired by
the protest. And anyway, he asked all of us and I kinda mumbled, so that's not binding or anything, is it?
Now, the thing with Autism Speaks, as far as I'm concerned, is that
they use hate speech and think it promotes "awareness" to be extremely offensive (and occasionally deceptive), even concerning their own children. However, some people don't find anything wrong with parents saying in front of their children that they want them dead or... well, anyway, the point is that if you go and tell people Autism Speaks is evil because they're hateful, some people won't listen. (Some people....)
No, what you do
, apparently, is tell them that Autism Speaks mismanages its own money and that only a tiny percentage of the funds they take in goes to help actual autistic children and their families. (Meanwhile, they seem to spend quite a bit of money into their own pockets
. And, as I found out talking to people then, into donating free tickets to their own benefits, but that might be reasonable, I don't know. Seriously, why do people give them money?
This is a very good argument because you can't... argue with it. Whatever you feel about cures or autism or killing your kids, you can't argue with the fact that these people waste your money. (Well, not my money, because I'd sooner give all my money to the scientologists than let so much as one copper penny get into their greedy little hands, but you know what I mean. They waste the money of people who don't know better than to give them money to waste, and that's just shameful.)
So, you know, that's the background on Autism Speaks.
Well, for those 45 minutes or so, I spoke to a very few people, and I listened to other people speak as well. (And a very special shout-out goes to those two admitted special-ed teachers who seem to think nobody ever listens to The Poor Parents and that it's reasonable to tell a child you want them dead. I hope your teaching licenses get revoked for the sake of the poor kids in your care. BTW - it's not like Autism Speaks is giving so much of its money to help you
and your students either, so yeah.) At one point, a man started giving us
his whole life story
the little bit he knew about autism. He's got a friend with an adult autistic son who... oh, I forget, who doesn't speak and who needs a lot of help. And the person he was talking to was going "Oh, well, most of us aren't that low-functioning and that's not the norm" and... I knew why I was uncomfortable with this line of argument, but it took a while before I knew how to say it, so I didn't interrupt.
It's very common among some parties to divide autism roughly into high-functioning and low-functioning for matters of convenience. Depending on who's doing it, they might say "Well, high-functioning, they're autistic but they can talk and get jobs and go to school and they're often brilliant, and they make eye contact and never do anything weird to make me uncomfortable!" or they might say "Well, yeah, but what about those low-functioning autistics who can't even communicate or live a normal life, who are randomly violent and sad sad sad all the time and probably retarded and who do weird things with their poop and they rock back and forth and it's weird".
And then, depending on how they divided it up and why, they might go "Well, we can't cure autism because we like those smart people" or "Well, those people who don't want a cure aren't really
autistic and I don't like them" or "Well, those people who don't want a cure are only saying that because they like those smart people, and they're not thinking about those poor low-functioning autistics whose parents all secretly want to kill them".
At this point, my thoughts go into several different tangents. Try to keep up, okay?
1. I will grant that there is some logical purpose behind labels such as high or low functioning. However, even if those labels were consistently applied
(which they're not), there's just too much variation in people in general. These two views people have miss the whole middle ground of people who need more help in some areas and less in others.
2. You'll also note that the way people in their own minds (as compared to any sort of clinical or official usage... which I also don't think is as consistent as it should be) group people is full of ableist assumptions, like the one that says that "low functioning" people always would want a cure if only they could understand (but can't) and that if anybody is capable of communicating in any way that they don't want a cure they're not "low functioning" even if they fit every other category out there.
It also makes fairly arbitrary assumptions about what is better and what isn't. Speech, for example. Hard as it is to believe, there are people in this world who would rather see their child work hard to speak badly than to see them communicate well in any other fashion
, be it sign language, writing, or an assistive device or... anything else. Or, take stimming. Stimming is what autistics are doing when rocking or flapping or pacing. It can be fun, it can be calming, it can alleviate boredom, and it can help people function. By any reasonable measure, stimming that doesn't hurt people should be considered a good thing - it helps people work and learn and get along in a world where things can be frustrating or overstimulating. However, it's not uncommon to hear people complain about it, to talk about how some of us "just don't understand" why it has to be eliminated in their kids. Recently, somebody posted on asperger
about her experience in working at a school for autistic kids, and the teachers went out of their way to shame kids for stimming because it's "weird". (By the reasoning used above, these kids would be "high functioning", as they talk and all that. However, when push comes to shove their parents would say they're not as compared to "those high-functioning autistics who don't want a cure who aren't really autistic and don't count". More on this in a bit.)
They also make the assumption that without lots and lots of help, these kids will never change or develop on their own. This is probably more complicated than that, although I'm not going to take any stand opposed to actual help.
3. Because I just used the phrase "ableist assumptions" and mentioned a few things which I think are fine about autism, I've put myself in the group of "those horrible people who don't want a cure because they Just Don't Understand!!! Did I mention the poop????? They don't want my kid to ever have any treatment ever!!!!"
It's because of this arbitrary division people set up. By sorting the spectrum into "low-functioning" and "they don't really count", they're able to put every possible aspect of being autistic into the "we have to get rid of it!!!" bin. (And then they wonder, some of them, why their kids are unhappy! More on this in a bit.) Because those of us who "don't really count" say that stimming is okay, or maybe that it's okay to type instead of write if it's easier for you, it's like
we said "No, you should absolutely never take any steps towards helping your child communicate in any way whatsoever" or "Yes, I think your kid should keep doing weird things with their poop and never be toilet trained" or "Sure, I think that being so sensitive to tags that you rip off your shirt is JUST PEACHY".
This is nonsense, of course. Nobody
endorses the view that autistic kids shouldn't be helped to function as best they can. Nobody
thinks that meltdowns are fun (especially not anybody who's ever had
one). Everybody in the world
thinks that people need to be able to communicate with others. But we can have those self-obvious views without also having the views that everything autistic is automatically bad, or that normal is a better way of being by definition, or that the only cure for the aspects that are
problematic is to eliminate autism altogether.
4. Around the same time I went to this protest, I read a few of the comments over in Schuyler's Monster. I stopped at the top, basically, because I was getting upset, but a few people with autistic kids were talking about how "those people who don't count" (Hi!) couldn't possibly
understand why a cure is important because, after all, we can't see how unhappy their kids are when they can't "make friends" or when they get "picked on".
(Interlude: That's my childhood in a nutshell. I've told my nieces. You can ask my sister. I was friendless for almost my entire childhood. I think I understand
this just fine.)
One shouldn't make assumptions, but that's just what I'm going to do. I'm going to assume that these people have kids who, logically, are "high functioning". Why am I going to assume this? Because I imagine that if I had a school-aged kid who had trouble with toilet training or who couldn't speak or who had frequent inexplicable meltdowns that this
would be my concern - not the fact that they didn't have friends. (The later comments may have been different, I don't know.)
So if their kids are probably a lot like I was as a kid, why don't my opinions count? Because it's convenient for them to say I (and anybody else anti-cure) have nothing in common with their children. It's really as simple as that.
Of course, I can offer up some advice as to make their kids happier, but they're unlikely to take it if it conflicts with their view that their kids' problems == autism. For example, I might suggest that most people (gay people, black people, autistic people, and everybody else) are happiest when they're accepted for who they are instead of being asked to hide aspects of their identity. And I might say that the ultimate cure for prejudice as expressed by their kids' peers isn't more prejudice but more learning. And I might even suggest that if their kids were typical and other kids picked on them, their answer wouldn't be "be more like them!" but "those kids aren't worth your time".
Or I might not waste my breath.
5. So this all brings me back to why those comments irritated me. WHEN you make a big deal about how "I'm not like THOSE people, most of us aren't like THOSE people", you're justifying the sort of division in people's thoughts that allows them to say that YOU don't count - after all, if you're not like THOSE people, and THOSE people are really autistic, where does that leave you? (And if some of THOSE people are also anti-cure, does that mean they're bumped into being NOT those people? What does that do when they need services?)
Furthermore, you undermine your own efforts to get accommodations. If you're not like THOSE people who rock in a corner all day, surely your boss is justified in actions taken if he's uncomfortable seeing you occasionally flapping your hands or spinning in your chair? (And if it's okay for YOU to stop stimming because you're not like THOSE people, then surely it's okay to make THEM stop stimming so they can be more normal - like you! - right? Nobody is helped by this!) If you're not like THOSE people who can't even communicate, how can you be justified in asking to email instead of using the phone? Can't you even talk? If you're not like THOSE people, why aren't you looking me in the eye?
(I agree that this is all very illogical, but nothing about this makes much sense except the simple fact that we need to not make arbitrary distinctions where they don't benefit any of us.)