Lots of Stuff About Us, All of It Without Us: Writing a Letter to a Senator

meowser-48.jpg 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.

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9 Responses to “Lots of Stuff About Us, All of It Without Us: Writing a Letter to a Senator”

  1. codeman38 Says:

    Slight correction– the film was called “I Am Autism”. “Autism Every Day” was their earlier film that involved, among other things, parents being filmed after being put in worst-case scenarios.

  2. meowser Says:

    Oopsidasium — you’re right, Codeman, I mixed up my AS propaganda pieces. Piece has been edited accordingly.

  3. sannanina Says:

    This is somewhat off-topic… but do you have any thoughts on how to respect the rights of people who are actually unable to advocate for themselves – at least without help or in the current social climate? I worked with women with various mental disabilities for a while and none of them would have been able to advocate for themselves in a way people would listen to. Actually, living in institutions most of their lives left many of them severely restricted in being able to express quite simple wishes… and I am pretty sure it really was about being raised in institutions or by people that did not encourage self-expression, not because of their disabilites per se. If you have been told every day of your life what you are supposed to wear/ do/ eat it is very hard to form your own preferences.
    On the other hand, some of those women would have made some quite problematic decisions if they would have had the opportunity to do so. For example, one of them would probably have drunk two or three litres coffee per day if she would have had the opportunity, one would self-injure in quite serious ways (partially because she had significantly lower pain sensitivity than most people) and several of them would have eaten pretty much all the food in sight, including spoilt food, or food that they had found in a garbage can.
    Then again, they were also not allowed to make decisions in areas of their lives that were completely unproblematic – like what they wanted to do outside of work or occupational therapy, what clothes they wanted to wear, or if they wanted to cuddle with a stuffed animal or not. (These examples are not made up – my supervisor insisted on not allowing them to cuddle with stuffed animals because grown women don’t do that, while at the same time treating them like children in all other areas of life. Hell, some of them were not even allowed to sit on the couch if they wanted to because they peed their pants at times – I never got why we didn’t simply get a water-repellent couch.)
    Today I am ashamed of ever having been part of that system (while I did not agree with how the group home I worked at was run I rarely raised my voice and I even treated our women at times in ways that seem totally unacceptable in retrospect). At the same time I am not completely sure how to help those women advocate for themselves. Most of them could talk (it becomes even more difficult for people that cannot talk), yet as I said before, it was a) very hard to decide if they were able to decide for themselves in a particular area of life and b) to find out their preferences or encourage them to form preferences in the first place.

  4. QuiltLuvr Says:

    About the health care amendment – people with higher numbers are more likely to also be older. This amendment is a sanction of age discrimination, writ in stone.

    I’m going to follow your example and write to my senator, too.

    Thanks.

  5. meowser Says:

    Sannanina, that’s a good question. I’m not sure exactly how to answer it right now; I’ll have to give it some thought.

    But I can tell you that there are autistic people — both nonspeaking and partially speaking — who use alternate methods of communicating. They write, they use sign language, they use what are known as “facilitated communication” devices which are basically keyboards attached to voice synthesizers. The fact that some autistic people don’t have full speaking skill but do have (often considerable) writing skill causes some mental segfaulting among people who think all language skill is the same, that someone who can write can talk and vice versa.

    I’m going to guess that the individual needs of those women you describe are all different. Someone with intellectual disability (i.e. what used to be called mental retardation) is going to have a different set of issues from someone without intellectual disability but with speech delay or extreme social anxiety or what-have-you. But I would want to make it possible for all of them to have outlets for their feelings. Maybe they can’t put it into words, but they can put it into piano chords, or something like that.

  6. G Johnson Says:

    The free choice option is the only one that would ever be helpful to me, and the only one I support aggressively. I have employer arranged health insurance, thankfully, but I am very unhappy with the level of service they provide, especially given the co-pays, deductibles, and monthly costs. I want to choose my own insurance company, and I’ll pay more for better service. I think Ron Wyden got the short end of the stick in that final late night session. Baucus and Kerry were particularly reprehensible. Both should be shown the door.

  7. meowser Says:

    I agree, Baucus has been sleaze incarnate around this issue, and the more “liberal” Democrats on the Finance Committee have been all too willing to roll over and play dead for him. Especially Kerry, who has over 30 years almost 20 years (oops) on Baucus in Senate experience and really should know better. (It’s actually been Rockefeller — ! — who’s given him the most pushback. I remember when the name “Rockefeller” was synonymous with “financial elite.”).

    And yeah, I’m really trying to understand the big picture of what Wyden has been dealing with before I write to him. I know he’s kind of taking a beating on this in ways that are entirely unjustified, and I want to take that into account.

  8. wellroundedmama Says:

    The whole health-care thing makes my head want to explode, even as I understand how important it is.

    I think it’s great that you’re going to write Wyden. He seems to be a pretty fair and decent guy, and he elicits people’s opinions a lot in his state, so maybe he’ll listen. You might want to check out his public meetings at home and see if you can attend one or get a one-on-one with him. That might go even further to get the message across.

    You go, meowser! You have such a way with words.

  9. meowser Says:

    Awww, thanks! The public meetings thing is an interesting idea; I’ll look into that. But I really have to have my “elevator pitch” together first. Speaking to people face to face is much scarier for me than writing, especially pseudonymously.


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