BADD 2010: The Total Erasure of Partial Disability

posted by meowser

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One of the things you’ll see come up in fat acceptance circles a lot, if you hang around long enough, is the concept that fat does not ipso facto equal disabled, and how loudly many of us feel the need to announce that. I’m fat, and I do decathlons! I’m fat, and I get through a 70-hour week and three hours of sleep a night, without even so much as a yawn! I’m fat and I do all my shopping on foot! (That last one would be, um, me, so please understand, I’m not pointing fingers here.) Fat people aren’t all bedridden, you know! In fact, most of us aren’t bedridden at all! We can do anything skinny people do! Yes, anything! You name it!

And I understand why that happens, I really do. Like I said, I’m not going to claim I’m 100% liberated from it, either. Let’s face it, you have a better chance of getting decent housing, decent food to eat, decent transportation, and maybe a little money in the bank left over if you can work in some capacity, than you do if you can’t. Government payments for permanent disability in the U.S. (either federal or state) are very, very hard to get and getting progressively harder, and even after you do get approved, they’re generally a pittance; as housing costs have soared in the last 15 to 20 years, disability payments have not kept up. And most of us don’t have families (of origin or of our own making) who can offer us total lifelong financial support, housing, medical care, etc.

So yeah, most of us have to try to work, somehow, in some capacity. And most of us probably want to, albeit not necessarily at what’s available to us at the moment. And in order to get people to hire you, you have to be able to give the impression of being reliable and capable of doing what they’ve hired you to do (even if you get some sort of accommodations), day in and day out. So it’s easy for us to let sentences like, “I’ve never missed a day of work in my life,” “I never get sick,” and, “I’m strong as an ox, I carried my own piano home from Sam Ash the other day on my back for ten miles and then up two flights of stairs” drop from our lips as a shield. Especially in a super-competitive job market like the one currently experienced by Americans, where employers are reluctant to hire even currently fully functional fatties because our health care allegedly costs a fortune compared to our supposedly low-maintenance thinner brethren. Throw in a disability of any kind, and you feel like it’s gonna take a miracle to be chosen.

So yes, naturally you’ll see a lot of fatasses denying that fat = disability. Unfortunately, that denial comes back to bite us in our generous-sized tuckuses when it comes to issues of access. We’re supposed to make ourselves fit the seats, no matter what it takes; the seats aren’t supposed to fit us. The societal assumption that all fat people have the same shot at permanent, healthy thinness is a profoundly ablist one, and when you frame it in terms of social model of disability, which states that our concept of what constitutes impairment is relative to what society has named the gold standard of behavior and functionality*, then you’d better believe I consider not being able to attain and maintain an acceptably thin body with no more than a token effort to be a disability. What people always seem to forget is that disability need not be total — that is, easily visible and preventing a person from working regularly and/or being capable of unassisted daily-living tasks — to be significant.

I know a lot of fat people are going to disagree with me about this, and that’s fine. But you go where I’m going if you believe, as I do, that access matters in assessing “ability” just as much as functionality. In many cases, “you can’t do X if you have Y type of body” becomes QED if it’s too much trouble for them to give you a frigging chair that fits your tush, or they decide you have the “wrong” body to sell X type of product or service. But if it’s hard for you to think in terms of partial disability, it’s perfectly understandable. It’s something that really does not get a lot of airtime in this world. In almost every conversation that exists out there, it’s assumed that the participants are all (currently) fully abled, and if we’re lucky, PWD will be considered at all, if they have a visible and permanent disability.

Now, I understand that many, many conversations out there are not for me, don’t concern me, can’t concern me. I’m not one of those people who feels the need to butt into every discussion with, “Oh yeah? What about the autistic women who were diagnosed in their 40s who are also lefthanded, Jewish, live in Portland, and are Mets fans? Huh? Huh? What about us?” (Actually, if there is more than one person on earth — that is, in Portland — who does fit that description, I will not only eat my Mets hat, I will do so on camera.) But it would be nice not to be forgotten entirely, as a person with partial disability.

Allow me to flash back to the big-hair ’80s, if you will, when the “briefcase or baby, or both?” discussions for women first started to get mass-media exposure. Even not knowing what my disability was then, I knew they weren’t talking about me; I knew I could maybe either parent or work, but no way on earth could I possibly do both simultaneously, and no way on earth could I ever manage more than 40 hours a week at either one. Even a straight 8-5 job with relatively little stress was pushing it for me; I always had headaches, always had digestive problems, was always tired, could never get enough sleep, was constantly anxious and overwhelmed. And the only “answer” anyone ever had for me was, “You come from a dysfunctional family.” (Yeah, like society isn’t one big dysfunctional family, right?)

I worked for a technical publishing company as an administrative assistant; I got paid more than the copy editors, who also had to work nights and weekends without overtime, whereas I could go home at 5. But copy editors could also parlay their experience later into better publishing jobs, and that was the name of the game. In order to “make it” at anything I thought was worth doing, you had to be willing to do some serious OT, put in the extra time, go the extra mile, get that extra degree while still working full-time, put your nose to the grindstone. In other words, prove you weren’t just some lazy slacker who didn’t want to work. And I knew I…just couldn’t. And I felt terrible about that, especially when I got into my 30s and realized that all those overworked, underpaid copy editors (and other people who had done the nose-to-the-grindstone thing) now had real careers making real money, and I was still stuck at the McJob level.

That’s where many of us with partial disabilities wind up, especially if we haven’t been given the tools to understand and obtain accommodation for our disabilities (which is, to paraphrase Ian Dury, “common as muck”). We can work, after a fashion, but no 70 or 80 hour work weeks for us, no pulling all-nighters to write our papers (or partying all night long) and then going to work the next morning for us, no being on our feet all day every day for us, no having jobs where people scream and yell at us all day for us, no simultaneously saving the world and raising our kids on 3 hours of sleep a night for us. Not even when we’re young and supposed to be bursting with energy. And nobody can ever understand why, other than chalking it up to bad attitude. As far as most fully abled people are concerned, either you can bust your ass round the clock, or you are quadriplegic (or the equivalent thereof) and get a government check. Those of us in neither category are barely assumed to exist at all, or to even be worth thinking about if we do.

Way before I was ever diagnosed, back in the big-hair era, I read a book on how not to sabotage yourself about money matters (I was big on the belief that I was sabotaging myself then, as if being broke was just a bad habit like biting my cuticles). The author scoffed at the notion that some people were convinced they had “some kind of debility that keeps you working from working more than part time, or at all.” Of course I couldn’t be like that! I couldn’t be some shiftless spoiled brat who thought work was beneath her! How silly of me to think I had a legitimate reason for all the headaches and stomachaches and twelve-alarm cramps and insomnia! I should just get over it!

This author was carrying around the same 200-pound eraser that everyone else was, the one that rubbed out all of us who actually did have “some kind of debility” that made us process information differently, or have chronic pain, or have bouts of refractory serious depression, or whatever it was that kept us from the kind of middle-class job and lifestyle we were “supposed” to be striving for. Not enough so that we couldn’t work at all, but enough so that we couldn’t be worked to death. How did we explain this to people? How could we make them understand? Especially if we barely understood it ourselves.

So I really do think step one has to be getting people with partial disabilities to recognize themselves. This can be tough, because getting a “legitimate” diagnosis that we can present to employers in order to make a job accessible to us (or to qualify for government benefits) can be challenging in and of itself. (And of course, employers or clients can just decide not to hire us because of our disabilities; they don’t legally have to tell us exactly why.) How many doctors “don’t believe in” fibromyalgia or Asperger’s or whatever it is that keeps us off both the “fast track” and the “parent track” at work? But I say, we can’t ask for something if we don’t know what it is we’re asking for. We cannot buy the “lazy slacker” label; we must reject it. Furthermore, as more of us do recognize ourselves, there will be more safety in numbers.

Will that be enough? If the experience of people with visible and total disabilities is any indication, probably not. Access issues for PWD are a huge and ongoing problem across the board. But if we recognize ourselves, at least we’ll be on the board, and that’s something.

* Contrary to popular belief, though, the social model doesn’t say there’s no such thing as true impairment, only that we don’t know what actually does constitute impairment if only a very narrow range of being is considered “okay.”