BADD 2011: (In)(di)visibility

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

Blog note for newcomers: Welcome to my world! All first-time commenters (or those whose IP addresses have changed since they last commented here) automatically go into moderation; I am in the U.S. Pacific Time Zone and work nights and sleep days, so it might take a while for me to approve your comment. Trolls, however, can expect to be immediately perma-spammed. Thanks.

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.

Want more BADD? Click here for the full list!