posted by meowser
Recently, something happened in the neurodiversity/autistic self-advocacy movement that made me feel right proud, although I had nothing to do with it. Autism Speaks — an organization that allows almost no autistic people to be involved in its operations, and is devoted to the goal of eliminating the presence of autistic folks from the face of the earth — recently came out with a film called
Autism Every Day I Am Autism, which they posted on their Web site. Apparently, they solicited footage of autistic kids and adults participating in everyday life, and then overdubbed said footage (without the knowledge of the participants) with a voiceover that was rife with we’re-autism-we’re-coming-to-eat-your-children’s-brains-mwahahahaha cant. (Transcript here.) And it took about two seconds before the participant bloggers in the Autism Hub (a group of linked neurodiversity blogs not dissimilar to the Fatosphere) raised enough of a stink that AS took the video off their Web site. (It can still be found on their YouTube channel, though.) The gist of the protests came down to this: They don’t even talk to us. They don’t even ask us what we think, because they think we’re delusional. All they care about is getting rid of us. Fuck them. They can’t do that to us.
Sound familiar, Fatospherians?
“Nothing about us without us” is a saying adopted by many stigmatized groups, and especially by the disability-rights movement, of which neurodiversity (ND) is a part. But every frigging day we see examples of people talking mounds of shit about fat people, and very few examples of those same people having talked to us in any great numbers. And it’s rarely questioned by anyone but us fringe wackadoodles, although I’m pleased as punch to see there’s a lot more pushback now than there was even a couple of years ago. But it’s hard to pick up a book or read a magazine article or a Web site or see a movie or TV show on any subject without running into an example of fat-bashing. So much about us. Damn near all of it without us. After all, we’re not just physically sick, we’re crazy too, right? Nothing’s getting between us and our baby donuts, and we don’t care about anything else. We’ll run over kittens in the street to get to our donuts, so how can we possibly be believed about anything?
You’ll notice, though, the difference between how the ND groups were received when they protested, and how fat-rights people are received when they protest. No, AS hasn’t changed their minds about us; they still think autism is a scourge, and furthermore, that anyone who has the presence of mind to complain about it can’t possibly be autistic. (A neat trick, no? Way to create a permanent underclass, by claiming everyone who actuallly belongs to said underclass is incapable of self-advocacy.) But they did something. They’re getting the idea that more people are on to them, and they were forced to tone down the rhetoric. And I truly think a big part of that is that 1) autistic people aren’t blamed for being autistic, and 2) NT people haven’t been terrified to death that they’re two slices of pizza away from become autistic themselves, because that’s completely impossible. “Nothing about us without us,” it seems, only really applies when you have no — and I mean NO — chance of ever leaving the stigmatized group in question. If you can just stick to your diet and get out of the group and stay out, what do you have to whine about? So you don’t get your donut, fatty, get over it.
But there’s overlap, oh yes there is. When we protest that we haven’t had any donuts and don’t even particularly want any, that there’s a lot more to body weight than just food, and furthermore it’s hypocritical to tell people to butt out of everyone’s sex life if you’re just going to turn around and butt into their eating life instead, how can we expect anyone, even other fatties, to believe us? Those other fatties raise their hands and say, “Well, I eat whole boxes of donuts and I’d be thin if I didn’t, therefore all fat people who say they don’t eat boxes of donuts are liars,” and we’re sunk. Most fat people think they’re to blame for their weight, so those few of us who don’t buy it aren’t real fatties for the purposes of the argument and therefore don’t count. If we’re lucky, we’re acknowledged as “freak exceptions” who can’t get thin no matter what; if not, we’re lazy liars who don’t want to work for our social rewards like everyone else has to. When they’re doing a story on fatfatfat, and they decide to put on their lipase-repellent outerwear and actually talk to one of us for the few seconds they can stand to, of course they’re going to look for the folks who live on donuts and Pepsi, not the people with metabolic disorders, not the people on heavy-duty psych meds (actual mental illness being another thing that eats into mass-media credibility, of course), not the vegans who have been fat since toddlerhood, not even people who merely eat the omnivorous diet in the same amounts and get as much exercise as their considerably-thinner friends. Confirmation bias.
Just like people want to believe all autistic kids will spend all their days biting passersby and smearing their shit around the walls of their institutions forever, and therefore autism must be wiped off the face of the earth, they want to believe that all fatties are stupid and sick mentally and physically and could stop being sick and stupid if we only tried, or alternatively, if only Big Food didn’t have us under perpetual helpless hypnosis (just a different way of calling us sick and stupid, really). People need their boogeymen. They feel so lost without them that they’ll actually make shit up about them to justify keeping them around. Therefore, eating boxes of donuts is seen as a punchline, something nearly all fatties secretly do, and even a fantasy of the perpetually dieting classes, rather than a relatively rare but vexing illness that’s damn difficult to treat and really is not fun at all for the people who suffer from it. We can’t even pick on the donut-snarfers anymore? PEOPLE HAVE NO SENSE OF HUMOR!
All this is a lengthy prelude to the fact that I’m working on composing my first letter ever to my senator. Or any senator. Or any elected official, ever. The subject: The amendment to the health-care bill that allows employers to give a deeper goody-two-shoes discount on insurance than they’re allowed to now. U.S. employers are currently allowed to have a 20% differential between people whose numbers are “perfect” and people who fall short of the mark; the amendment, proposed by John Ensign (R-NV) would increase that to 30% and could even go as high as 50% according to “HHS secretary discretion.” It was approved by the Senate Finance Committee by a 19-4 vote; all four “no” votes were by Democrats (Schumer, Menendez, Rockefeller, Nelson). Kerry, Stabenow, Wyden, those great advocates of the downtrodden, all voted yes.
Ron Wyden is my senator. As politicians go, he seems like a fairly reasonable person who might be willing to listen to a well-crafted argument about why this bill sucks (and doesn’t actually contain the word “sucks,” in all likelihood). Here’s the main reason: We don’t have total control over any of our “numbers,” let alone all of them. It might not sound too radical to allow employers to give a 30% discount instead of 20% for the halo-wearers, but what it really amounts to is a fine on those of us who don’t 100% comply — you “good” people get the old rate during annual open enrollment, and you “bad” people who put butter and salt on your broccoli pay the new, higher rate! Yes, they provide a waiver for people who have well-documented medical reasons for not being able to comply; being someone with a metabolic disorder on psych meds, I have a pretty good chance of getting that waiver. And it doesn’t seem likely that if the difference is 30% as opposed to 20%, that it’s going to make that many more employers start nosing around in our britches. But if it goes up to 50%? What employer could resist? And at the rate things are going, it’ll be at 50% before we know it.
I fail to see how charging people more for health care is going to make them healthier. Taking more out of their pockets for premiums means they have less money available for quality food, not to mention that it essentially functions as a poverty tax, since many workers live in areas where obtaining quality food is nearly impossible. It probably also means that there is a possibility that people will have to take second jobs to make up the shortfall in income, which would leave them more tired, more stressed out, and with less time for “joyful movement” and “slow cuisine.” And if they think forcing people’s numbers down by any means necessary is going to mean a reduction in health care costs, they’re not seeing the big picture. More pills, more therapy, more tests = more doctor visits. Not to mention that it encourages more and more buttinskyism on the part of employers; not wanting people to smoke on the job is one thing, since that affects the health of others, but how is it anyone’s business if someone has a cigar in their own living room? And do I really have to tell my boss I have PCOS and Asperger’s and depression bad enough that I was once hospitalized for it? What’s next, are they going to get to read all my shrink’s notes, too?
Part of the reason I’ve never written to an elected official is because I have to crunch down everything I’m thinking about into two or three paragraphs. As you know, that’s not necessarily a natural gift of mine. But this is a first step, in trying to get people making the laws think a little harder about the people who are going to be most affected by them, people who are different from themselves in ways they don’t yet understand. I’d love to know if any of you have written a letter to a politician other than a garden variety fan or hate letter, and what the result was.