posted by meowser
This is my first-ever post for Blogging Against Disablism Day! Which actually was yesterday. But I did write it then and didn’t get a chance to post it until now, so hopefully it will make the list. If not, click the picture and go read the awesome posts there anyway!
Until very recently, I would have refused even the very idea of considering myself a “person with disabilities.” (And please note the plural, about which more later.) It’s not that I didn’t always have conditions which limited my ability to live the kind of life I thought I wanted to be living, or which caused me great pain. And it’s not as though I thought being thought of as “disabled” was icky to me or anything. It was more like, how dare I? How dare I call attention to myself when other people needed and deserved the attention more than I did? I have a job, albeit one where I telecommute. I can get up and down stairs, albeit more slowly than most people. I’ve used assistive devices only for short periods of time when I had an injury. I don’t have a degenerative or terminal physical condition or horrible, intractable physical pain. I can bend, stoop, twist, reach, cook meals, shop for groceries, drive a car once in a while, manage to get my cable modem bill paid before they switch it off, clean up cat vomit, read, write, wash my clothes without ruining them (usually), crochet, pick up a musical instrument once in a while…all kinds of things. If I take birth control pills, I can even avoid the five-alarm menstrual cramps and killer PMS and migraines I used to get when I was younger (and don’t get me started about the first GYN I saw, who refused to prescribe them because “there’s a death rate on the pill” and thus I couldn’t get them before my mid-20s…gah). By those standards, I am not a person with disabilities, to be sure.
But now that I know something about the social model of disability (i.e. disability is subjective and depends upon being able to complete the tasks society expects of you, which may or may not be reasonable) and the medical model (i.e. you, PWD, are deficient and something to be fixed), it’s interesting to compare the two models with all the medical records, thousands upon thousands, I’ve created over the years. People don’t just go to doctors or hospitals when they have serious, physically painful or life-threatening problems; often they wind up there because in America (and not just here, either, although that’s the part of the world I know) between the ages of 18 and 50, maybe later, you are expected to be a bundle of energy and accomplishment. And millions of people, gods know how many, can’t hack it. You are supposed to sleep only five or six hours a night, grab a cup of coffee, and go go go go go. You are supposed to be able to handle (most of) the following, and probably more, for those 32 years without a hitch:
- working and going to school at the same time, often “full-time” at both
- having a healthy, honest, loving monogamous relationship (and commencing said relationship young enough to “start a family”)
- raising a family of well-behaved, happy, safe, wonderfully nourished children (note plural!) who are thrilled to eat all their greens and run around the neighborhood with a group of equally wholesome friends who all remain so up until they go away to college (and of course your children must all go to college!)
- lifting heavy objects and hoisting them up and down stairs for hours at a time
- driving defensively but not overly so every single day without your head exploding from three hours of horn-honking traffic
- being able to keep jobs through multiple rounds of layoffs because of how completely cheerfully industrious and useful you are
- staying trim, lithe, and youthful-looking even if your family tree is going to fight you on that every step of the way
- always eating lots of veggies and whole grains
- always avoiding sugar and fried food, and having the presence of mind to feel guilty when you do cave in and eat them
- never smoking or overindulging in alcohol or drugs
- if you are pregnant, never ingesting anything “bad” or being too sick to work as hard as you always have right up until the moment of delivery, and being ready to pop right back to your desk undistracted the minute the episiotomy heals
- working out every day without your workout and diet program leaving you too injured or ill or stressed to continue
- having a mortgage, a reliable car, sparkling clean credit and lots of savings
- always being able to smile, smile, smile and act like you’re on top of things when you know the people around you can’t handle how you’re really feeling (and they usually can’t)
- having enough of a social life that people don’t become suspicious of you, but not picking the “wrong” people to associate with
- developing a career (or having a partner with one) that will impress people when you tell them what it is
- and never, ever be too sick, too tired, in too much pain, or too overwhelmed to beg off from your appointed duties for more than 48 hours (longer if you are more affluent and have people who can cover for you)
You’d think that those expectations existed because the vast majority of people aged 18 to 50-whatever could actually keep all this up. But really, it’s not true. The reams of medical records I’ve created is the proof in the pudding that what we expect of “healthy” people in this world is ridiculous. A lot of people can’t even think about living that way; a lot of people start out living that way until serious illness or injury arriving out of the blue throws them a curve; a lot of people try, try, try to live that way thinking they have to and break under the strain, sometimes for good. It’s not just that people are considered to have disabilities because they don’t live up to society’s standards, it’s also that society’s standards themselves often create disability — i.e. actual loss of ability and serious pain — where it otherwise might not exist if we weren’t so rough on each other.
I’m one of the ones who can’t even think about measuring up, and never could, although I felt plenty shitty about myself about it and spent untold energies clobbering myself for it.
For starters, I am fat. I started out being merely a bit heavier than average, thanks to polycystic ovarian syndrome; once I started on psychiatric medications in my late 20s, I gained more than half my body weight again. Being fat in and of itself does not impede my functionality, but it does more or less eliminate me from many people’s Good, Attractive, and Capable Person Lists. People thinking you can’t do stuff, and thus not getting the chance, often winds up materially identical to not actually being physically able to do it. Looking “healthy” is much more important in this world than actually being “healthy.”
Which brings me to major depression. When I say I had serious depression from the time I was 11 years old, I am not kidding around. I mean that I felt like I wanted to die, and came close to acting on that wish, enough times that it really did threaten my life, and the rest of the time felt like walking through rapidly hardening cement. Depression was like a pack of trolls living in my brain alternately spewing razorblades and ether, telling me I was complete garbage and deserved nothing but censure, then taking a vacuum hose and sucking up the last of my adrenaline so I couldn’t fight back. It cost me time from work, it cost me friends, it cost me fun, it cost me achievement, it cost me relationships, and most of all, it cost me ME. Being fat is a million, billion times better than that any day of the week, let me tell you.
And then we come to Asperger syndrome. I have gone back and forth on whether I consider this a “disability” or a “difference.” There are things I’ve come to love about being aspie; I like that my brain comes up with things a neurotypical person might not. Given my very late diagnosis, though (age 44), and all the years I had to struggle with this not knowing what the hell it was, it’s been suggested to me that the severity of my depression is linked strongly to having my reality denied for so long from such a young age. (I’ve seen studies that have put the rate of suicidal ideation among aspies at around 50%; I’m not surprised.) And since so much of success in life is connected to being able to decode and respond immediately to people’s unspoken wishes, and be physically graceful, and squelch what you are really thinking and feeling for the sake of propriety, of course we aspies are usually shut out of the rat race. We must find another way to live, and tell all those expectations to go stuff themselves, or we die.
Fat, major depression, Asperger’s: linking rings. Hard to separate one from the rest. You could, if you wanted, make the argument that my true disability is the depression — and really, if I could have one of those three things “cured,” without causing myself undue harm in another department, that would be the one I would choose. I am not one of these people who romanticizes this condition; it SUCKS. There is nothing romantic about not being able to sit down with your favorite musical instrument because you think every sound you make is the sound of horseshit. There is nothing romantic about thinking that anyone who claims they like you just feels sorry for you, even if they have chosen to co-own a bed and three cats with you. There is nothing romantic about being scared to fucking death you’re going to swallow every pill in the house or go have something dry cleaned just so you can have the bag to suffocate yourself with. There is nothing romantic about feeling terminally stuck in the driveway in neutral for decades upon decades. There is nothing romantic about having to miss work, and even lose jobs, because you can’t stop crying for days even though nothing bad actually happened. You can KEEP that shit. KEEP it. I’d gain 100 more pounds if it meant I’d be guaranteed never to feel like that again. You cannot possibly imagine the sweet relief of remission unless you’ve experienced it. This, because nothing else has ever worked for me no matter how hard I’ve tried, I need doctors and their evil annoying pills to keep under control. Maybe forever. If people think that’s something about me that actually needs fixing — a disability according to the medical model — I can’t in good conscience argue.
But would the depression have gotten that bad without the sheer hate heaped on fat people (especially fat female people) in this society, or without the thousand-tiny-cuts hostility that NT people demonstrate towards those of us on the autism spectrum? I’m sure it would still have existed — it’s not like I don’t have plenty of thin, neurotypical wet blankies in my family tree — but would it have been THAT bad? Kill-myself bad? Everybody-hates-me bad? Hard to fathom. When are we going to ask, as a society, “are we making people feel shitloads worse, both physically and mentally, than we really need to?”
I’d like to know, and so would my doctors.