BADD 2011: (In)(di)visibility

Blogging Against Disablism Day, May 1st 2011
meowser-48.jpg posted by meowser

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I am not divisible from my fat.

- Marilyn Wann

How do we separate You People from this terrible condition you have and make you normalnormalnormal? How? How?

I’m a big fatty and a big autistic. There are differences between how I’m regarded in society because of my fat, and how I’m regarded in society because of my autism, but the big difference for me is the issue of individual blame. Nobody has figured out a way to rank out autistic people for “giving themselves autism,” not yet, so all the catastrophizing about autism centers around how did we as a society damage so many brains all of a sudden, and how can we stop? (Of course, those of us who were diagnosed in adulthood, or clearly had autistic ancestors whether they got the diagnosis or not, could tell them they’re asking the wrong damn question, but we’re usually dismissed as either too autistic to see beyond our own noses or not autistic enough to understand. Funny how that cuts in both directions.)

But fat people get blamed for their fat from here to Sunday, and every Sunday after that. It’s all about the naughty things we put in our mouths, and if we’d only stop, we could be normalnormalnormal forever…right? Never mind that almost nobody manages to lose a third or half or, gods help us, three-fourths or more of their body weight and keep it off for good with no physical or mental health consequences whatsoever. Somebody, somewhere did it, just like somebody, somewhere fed their autistic kid the “right” diet and made them normalnormalnormal, so that means it will work for everybody, everywhere.

I know there are people in fat acceptance who don’t like their fellow fatties defending their “good health habits,” that doing so defends classist and ablist tropes about how we somehow owe it to the world to be perfect angels with no vices in order to earn the “good fatty” badge (while thin people are perfectly free to have all the vices they want, as long as said vices don’t show up on their thighs). I understand where they’re coming from, but it’s also true that being perceived by others as being self-destructive and unreliable costs us jobs, educations, housing, medical care, and so on. The perception of fat people being self-destructive and unreliable is directly rooted in the idea that if we just tried a little, normalnormalnormalcy could be ours, and we just don’t feel like it, pass the chocolate-covered French fries. But for most of us, achieving the state expected of us wouldn’t just be a matter of trying, it would be the equivalent of earning a Ph.D. in astrophysics while simultaneously working swing shift as a police officer and raising triplets as a single parent — and we’d never get to stop. Maybe someone can actually do this, but expecting it to be a routine occurrence is, frankly, an expectation not supported by existing evidence.

I’m spared this expectation when it comes to my autism. But I also know that almost all the research on autism is going into prevention — “catching it” as early as possible, preferably in utero, and if not, then in babyhood so that as many autistic tendencies as possible can be beaten back with various therapies. It’s not going into what I can expect of my autistic brain as I age, or into services that might actually make my life better, or into improved diagnostic tools for adults, or even much in the way of assistance for autistics of any age whose families are not affluent. In fact, this focus on prevention pretty much rules out making any effort towards improving the life of any autistic person who insists on presenting as autistic after the age of, oh, 16 or so. We’ve been written off as useless employees, bad relationship partners, people whose judgment can never be trusted, people whose executive function in all areas renders us incompetent, and even too dangerous just to be around, just because of our diagnosis. Get to know us as individuals before deciding we’re wastes of skin? Hah. Never happen.

Make no mistake about it. In both cases, it’s divisibility we’re fighting about. It doesn’t much matter if divisibility from our “abnormalcy” is thought to be a matter of individual initiative, parental effort, or sweeping societal change. The basic assumption is that there’s a normal person underneath waiting to be liberated, and the goal of finding that normal person “trapped” in a defective body should take precedence over everything else.

But Meowser, suppose there WAS a cure for those things? Wouldn’t you want it?

Short answer: Not as much as I want a cure for my irritable bowel syndrome. That really blows some chunks.

Longer, more serious answer: That depends. What else would this “cure” do to me?

The very nature of fixing things means you run the risk of breaking something else. Sometimes that risk is worth taking. Not eating gluten or cow’s milk (I can handle goat’s milk in limited amounts) is a royal pain in the patootie, and I dread going back to New York and being surrounded by great pizza and bagels and cannolis and challah and wondering how I’m going to avoid succumbing (and subsequently spending way too much of my trip in the john). But I remember the days of crapping my brains out and having horrible gas pains pretty much every day of my life, and I don’t want to go back to that, thanks. That “fix,” so far, seems to be worth it.

But if you’re Officially Fat, you already know what it’s like to be faced with the hard sell of a “cure” that turns out to do more harm than good. We’re faced with incredible pressure to take diet pills that will inevitably get pulled off the market because of serious health sequelae, get surgery with an incredibly high risk of death and complications, or spend every spare minute we have working out like hamsters on a wheel while running a serious energy deficit. This is not optional; in many cases, we must actively disobey our doctors not to take the “cure” that’s offered us, even though the evidence that it will actually make us permanently thin is pretty damn sketchy. I don’t have to, because my doctors are smart enough to know that telling people they have to lose half their body weight in order to improve their health is ridiculous. But I’ve seen enough medical records through my job and talked to enough of my fellow fatasses to know that this makes me quite privileged indeed.

The “cures” offered so far for parents to try to “fight” autism are either extremely risky (chelation, avoiding vaccines) or much too expensive, time-consuming, and socially isolating for them to be doable for most families (full-time ABA, GAPS/SCD diet), and the evidence that they actually help autistics is not exactly clad in iron, any more than the alleged cures for “obesity” are. What makes anyone think any subsequent so-called cure is going to be any different? Wouldn’t you more or less have to have a full brain transplant in order not to be autistic at all (as opposed to simply finding it easier to pass for nonautistic)? And if you have a full brain transplant, how are you still you?

Recently, codeman38 commented on Shakesville that while he wouldn’t want the full brain transplant, he wouldn’t mind having an “off button” for the autism to be used in certain situations. I know what he means. I can’t drive a car because I get momentarily overwhelmed by everything whooshing through my filters; I wouldn’t mind a “cure” that would allow me to turn it off while I was driving. But again, if I take it, what else is it going to do to me? I’m already on some pretty serious chemicals for major depression that have, for the last 20 years, pretty well mulched what was left of my metabolism; I accept this, because to me, nothing is worse (or more life-endangering) than feeling like you’re a piece of shit that deserves to die as painfully as possible. Is Asperger’s in that same category of soul-sucking, life-threatening puke vortex? I don’t think so. Not enough of one that I would monkey with my other major organs in order to turn my brain “right side in.” Whatever that means.

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21 Responses to “BADD 2011: (In)(di)visibility”

  1. lilacsigil Says:

    I find it really interesting that the “off-switch” mentioned isn’t actually an off-switch for autism, it’s an off-switch for some unpleasant or dangerous effects of autism in particular situations. Autism itself is not the problem, just like fat is not the problem. Would I like a switch that can, say, move my fat around so I can sit in a small chair or move some fat into my bum rather than my belly to make the limited number of pants I can buy fit better? Or take the fat off for visiting a doctor? Sure! But I’d rather put an off-switch on other people’s prejudices and attitudes.

    • meowser Says:

      I often wonder what the hatebags would say if we could actually take our fat off and put it in the cargo hold during a flight. I suspect they’d still resent having to fly in the same plane with it.

    • codeman38 Says:

      “I find it really interesting that the “off-switch” mentioned isn’t actually an off-switch for autism, it’s an off-switch for some unpleasant or dangerous effects of autism in particular situations.”

      Heh, I was going to agree with this, then I realized that I was the one being quoted so of course I agree with it. ;-)

  2. Erin S. Says:

    I’d like an off switch for the word “normal”. I mean, what’s so great about “normal”? Oh yay, I’m exactly like everyone else and therefore completely interchangeable thus have absolutely no worth as an individual! I’m NORMAL!

    And the pursuit of “normal” kind of diminishes you as a person I think. If you spend all your time trying to act like everyone around you, then you never really develop your own individuality. Or you end up trying to be unique just like everyone else… you know, like a subculture of teens who scream that nobody understands them and they’re unique and special, but they’re all wearing the same clothes in the same way while listening to the same music and just in short all being little clones of each other?

    So, short version… I wish we could just do away with the whole concept of “normal” as being a desirable trait. Maybe we should all start using the word average instead, since that’s already coded as being undesirable. You aren’t ‘abnormal’, you’re just not average. heh

  3. Selene Says:

    I’m here from BADD, great post!

  4. Pinkie G Says:

    I hadn’t actually thought that far, about the focus being on autistic children (another version of OMG won’t somebody think of the children!), but now that you point it out it’s so obvious. Thank you for that.

  5. Carl Thompson Says:

    Interesting post this!

    You can read mine for BADD2011 here if you like: http://www.workingatperfect.com/2011/05/blogging-against-disablism-day-steps.html

  6. Ruth Says:

    Meowser,

    OMFG. When I read you talk about Asperger’s b-4, I thought I might have it, but now…that Shakesville piece was like you were talking about me. I got a 35 on the AQ test. (I think I would have scored higher had I not been meditating for years–not saying meditation “cures” anything, but it sure did help me with a lot of obsessive manifestations–of course Y (and other’s)MMV. Also, I was reminded of some weird stuff from my childhood: example: I used to chew on the front of my shirt till it was drenched. I hid it from people. When teachers, et. al., would comment, I would lie (which pained me) and say that I spilled water on my shirt. I just couldn’t explain the compulsion, and was so ashamed. Also, I was (am?) hyperlexic. I could read when I was one year old without being taught. I would read newspaper ads over my dad’s shoulder, and big long labels in the grocery store. Things I didn’t know about or understand. This post has shed so much light on so much that has frustrated me all my life. I can’t wait to share my discoveries with my husband. Thank you!!!!!!!!!!!!!

    • meowser Says:

      That’s great, Ruth, that all that stuff rang a bell for you. I’ve since found out that the AQ needs to be taken somewhat with a grain of salt. but if it leads people to the diagnostic criteria in the DSM, where they can see if even more bells go off, all the better!

      • Ruth Says:

        Yes, so true, all self-diagnostic tools, as well as the venerable Dr. Google whom I visit regularly ;-) need to be taken with a grain of salt. But this sure does fill in a lot of blanks. So, thanks again.

  7. vesta44 Says:

    What I want is some kind of miniature device I could wear that projects a “normal” image of me to all the fat-phobes so they would leave me the hell alone. Because really, they’re not objecting to my fat because of my “health”, they’re objecting to my fat because they don’t like looking at it. Fine, I’ll give you a “normal” version of me to look through and ignore, because I can guarantee that even if I became “normal” by your standards, you still wouldn’t like me. I’d still be a cold, cruel, callous bitch, I’d still have no patience with stupidity, I’d still have compassion for people who have less than I do, I’d still have a warped, wicked sense of humor, I’d still be a bookworm who doesn’t have much use for most people, etc, etc, etc. In other words, I’d just be a thinner version of exactly who I am now, who isn’t all that likable to most people (and that’s the way I like it).
    So why should I go through all the hassle of trying to become “normal” when I actually like who I am now, size and all? I’ve done the diets, the diet drugs, and the WLS. None of it made me thin, none of it made me even close to “normal”. All it did was worsen my quality of life and lessen the amount of trust I have in the medical community, which wasn’t all that great to begin with. I’ve been fat for 35 of 57 years of life, I’ve become rather fond of my fat, thank you very much.

  8. Rosa Says:

    As always, thank you so much, Meowser. I had a really difficult day with my aspie/ADD/sensory/something/overdiagnosed/underdiagnosed kid and an currently-very-difficult friend today, and the linkages you just made helped me out a LOT.

  9. Helen Says:

    Brilliant post. I came here from the BADD website, and am pretty blown away by what you’ve written. So thank you.

  10. buttercup Says:

    I admit it, I squeeeeeed when I saw you’d posted. Long time no see, darlin’! And excellent post, as always.

  11. moxicity Says:

    Hello. I recently added fat fu into my google reader and this is the first post I’ve seen and it just fit into my thoughts so perfectly. I’m currently taking a short course to become a support person for a child with autism spectrum disorder (I’m also a social work student).

    I just arrived from our first introductory day which spoke of autism generally, the problems associated with it and how it works overall. We (the people undergoing the course) will probably we working with heavy-level autistic children (aside: in Estonia, disability is ranked light, moderate, heavy and severe, taking into account the person’s overall success of livelihood). The school/center that is giving the course also has children with mostly heavy disabilities, two classes of autistic children among them.

    What I was wondering, reading your post… I am a bit confused as to the variability of autism after having read/heard about several online activists with autism. It is unclear to me to what extent it can vary, since I have only ever come into contact with heavily autistic children and a few with Aspergers.

    To wrap a very long post short: Would it be possible for me to ask you, or can you suggest/direct to sites where question are taken? If no, then no. But I’m intensely curious after my recent experiences with autistic children. (example: out of a group of 6, only one spoke in a very rudimentary way, a few muddled words spoken in imitation of the teachers. one of them mostly screeched and bit herself, she was having a bit of a bad day also. the others mostly looked at the ceiling and waved their hands in various ways.)

  12. Open Thread And Link Farm: Carnival Barkers Edition | Alas, a Blog Says:

    [...] “There are differences between how I’m regarded in society because of my fat, and how I’m regarded in society because of my autism, but the big difference for me is the issue of individual blame.” [...]

  13. Jackie Says:

    I have become so tired of being ignored in restaurants when I ask not to besat by children because I have a sound sensitivity condition due to having Asperger’s Syndrome, that I bought a “No kids!” button off Cafe Press to wear next time I go out to eat.

    If people really cared about helping people on the Autism Spectrum, they would help to make it aware that for some of us sudden loud or high pitched sounds literally can cause us pain. Seems according to Facebook people only care about this being known about their children on the Autism Spectrum. These parents will be in for a surprise, once their children grow and then nobody at all cares about their sensory issues.

    I also am not fond of the whole idea someone is supposed to be able to tell the difference between their child having a meltdown due to their Autism, and a NT child acting up. Also, these parents care so much about their child and their condition, but don’t consider there could be another person on the Autism Spectrum provoked into melting down by their child’s melting down?

    If parents just put their egos aside, and thought for once about the world outside their child, this might not be an issue. If your child has Autism and has a screaming meltdown, then like an NT kid they should be taken somewhere to calm down. A screaming kid with Autism, and one without appear exactly the same to most people, and are equally irritating. Having a child with Autism doesn’t entitle you to ignore the rest of the world, and demand understanding.

    The parents I know who have children with Autism take responsibility for when their child melts down. They don’t shout out “MY BABY HAS AUTISM!”, they simply try to go about their day. More parents should be like them, parents who have NT children have even less of an excuse to let their child go on screaming.

    In the end all of this, just makes me have to resort to tactics like wearing a “No Kids!” button, because most parents these days just can’t get ahold of reality. You are responsible for your child’s behavior. If your child acts out you’re supposed to apologize, not antagonize the person who just wants your angel to stop screaming. I don’t know why this is so difficult.

  14. DebraSY Says:

    Wow, Meowser.

    (If you didn’t figure it out, I’m catching up today.)

    Once again, you write such an insightful post. You draw lines between seemingly unrelated social conundrums and you shed light. I thought you aspie types couldn’t communicate with the rest of us. Yeesh!


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