Daily Archives: November 4, 2006

What people are “supposed to” be doing.


Well I may have been silly to sign up for NaBloPoMo, but I did. It’s this thing where you write a post every day in the month of November. The trouble is, I don’t want to bore people with vacuous posts made only to fill a quota.

But, fortunately for me, I found an old draft sitting around in my massive amounts of drafts of posts that I’ve never posted before, and it seems to have substance to it:

It’s finally all decided to make sense, one part of what’s bothered me for a long time in portrayals of living as a relative to a disabled person.

It’s summed up in statements like, “I didn’t get to be a kid because of my brother,” or “I can’t do the things I’m supposed to be doing as a young adult because I have to worry about my sister.”

I even had someone (if that person reads this, it’s not a big deal anymore, just an example) tell me that what people were supposed to be doing at her age (which was also my age) basically involved… something like finding oneself, hanging out with friends, not really worrying about a lot, and certainly didn’t involve taking care of someone like me.

For every stage of life, it seems there’s something people are “supposed” to be doing that doesn’t happen to involve the inconvenience of a disabled person plonked into the middle of it. If you take this to its logical conclusion, disabled people are not “supposed” to exist at all, because obviously our main function is to interfere with what non-disabled people (or, at times, people who are disabled in a different way) are “supposed to” be doing.

This kind of talk puts us firmly outside of basic human experiences, when it’s actually clear that disability is a basic human experience, in fact one of the most universal if you take this across the lifespan. But this notion that nobody is supposed to have to deal with anything as inconvenient as our existence (in a social world that has been designed purely for the convenience of other kinds of people) kind of absolves everyone else’s responsibility for dealing with us at all. It, in fact, makes things like disability-based segregation make total sense: After all, we wouldn’t want disabled people inconveniencing everyone else.

Of course, this is not as simple as just disabled and non-disabled. Some kinds of disabled people can say that maybe they don’t need to be forced out of various places, but some people do. Just imagine I’m including that sort of scenario in the rest of what I’m saying, though, because I’m having a hard enough time with language at the moment as it is without covering every contingency.

What we have, is a situation where non-disabled people have a fantasy about a “regular life,” which doesn’t really include things like disability, or anything else “inconvenient” to that life. Instead of being a part of that life, disabled people are automatically intruders upon that life, inconveniences. Burdens. There is a set of things people are “supposed to” be doing, and relating to disabled people is not one of them. Just not on the list of “supposed to”. So, we supposedly deprive everyone else of their rightful developmental stages, from childhood to adulthood all the way into retirement. Because someone came up with a biased set of developmental stages that somehow doesn’t include us or, I suspect, a lot of other people. People don’t get to “be a child,” “be a teenager,” “be a young adult,” “be a mature adult,” “enjoy their retirement,” around us. We take that away from them… supposedly.

Now from my perspective, this gets interesting. Because, well, I’m in this worldview the barrier. I’m the person who supposedly gets in other people’s ways. Somehow, the impact of me on their worlds is supposed to be earth-shattering. Yet, at the same time, I’m facing a world that is not designed for me, has zero place for me, half the time denies that people like me even exist or count as human, is as liable as not to permanently segregate people like me in institutions so that we’re not trouble to other people — is in fact so much not designed for me that every time I interact with it it finds novel ways of shutting me out. Everywhere. And I am not supposed to say anything at all about this. I am, in fact, supposed to shut up and quit being inconvenient. They see someone like me as one single barrier to their living appropriate lives, yet somehow the multitude of barriers I face, including possibly barriers to survival, because of their definition of appropriate, means nothing.

Meanwhile, I am working hard all the time just to keep up with an environment that is designed with only certain kinds of people in mind.

The amount of work I do, in fact, would probably be unthinkable to a lot of the people who imagine people like me to be lazy. (This is also true of poor people and probably a lot of other people besides disabled people, all of whom get scapegoated as lazy.) I am constantly adapting and pushing myself to and past my limits trying to keep up. (To anyone curious, my limits look like everything going totally blank and all conscious thought and movement stopping. They’re not the sort of thing that a little effort gets you past, in fact hitting them is usually a sign of too much effort, and hitting them occurs regularly.)

Disabled people have been part of families since families existed, and there’s plenty of evidence of families assisting disabled people since prehistoric times. While the idea of disabled people as burdens who give nothing in return is an old one, the idea of life in general as something that’s supposed to be easy and follow a particular developmental plan seems like a relatively new one.

I don’t know who invented the idea of a carefree childhood, but such a myth has never been the case for the majority of children in the world. I don’t know how many stories I have heard of teenagers raising their younger siblings themselves after the parents died, but these and other stories of young people forced into situations that modern middle-class American society considers “adult” are also probably more the rule than the exception.

But these days, we’re told it’s supposed to be different. Children who provide a lot of assistance to their parents or siblings, for any reason, are urged to believe they’re missing out on a proper childhood — proper childhood is apparently not supposed to involve any real work at all except for “chores” around the house. And if kids are doing the chores because the parents are unable to do them, then even if it’s the exact same chores they would’ve otherwise been assigned, that’s still supposedly wrong. I’ve been told I “missed adolescence” because of where I spent most of it, but in reality that period of life is only a period of total irresponsible abandon between childhood and adulthood, in times and places where people can afford for it to be so. I couldn’t.

Now I want to take a look at my actual family. (The following labels are ones that they themselves agree to. I’m not going to put everything in quotation marks, it’s just too confusing that way. So consider any of my usual criticisms of psychiatric labeling and such implicit in all this.) My father and one of my brothers have AS. My mother is bipolar. And I’m autistic.

I know how I am supposed to feel about this — according to various bits of popular psychology — by how I see people all over the place portraying it. I am supposed to feel cheated out of a proper childhood by growing up with a mother with what’s considered a severe mental illness, and I’m also supposed to be traumatized by it and very much wish that she would take medication (and possibly involve myself in NAMI and try to force her to take medication, and commiserate with all the other NAMI members when she won’t). I’m also supposed to feel unloved by my father, and like he totally lacks any empathy, and is in most ways defective as a parent as well. Meanwhile, I think I’m supposed to view my brother as a burden and an embarrassment and wish I had a normal brother in his place. In fact, forget just him, I’m supposed to feel that way about my entire family.

Needless to say, I don’t feel any of those ways about any of my family. They are just the ways that I am told I should feel, and other people are told they should feel. And of course, if someone already feels that way, their feelings should be “validated” as “natural under the circumstances,” and then they should go around reassuring other relatives that their feelings are natural too. And, of course, we should all go around telling anyone who doesn’t feel this way that clearly they didn’t live through the hell we did. Or something. Never mind that feelings, as usual, are the results of not just a situation but of our preconceptions about the situation, and that a lot of those feelings stem from some pretty bad preconceptions.

I did not grow up expecting that I was supposed to have only a certain kind of family, instead of the one I had. I grew up, in fact, considering myself pretty lucky, compared to among other things the relatives who really did have to do things like raise all their siblings from an early age, because their parents either died or were too busy to do it all themselves. I also knew that we had it a lot easier growing up than our parents did.

Aside from that, it never occurred to me to divide my family up between which members could be by some standards considered disabled and which couldn’t. Sure, great-grandma used a wheelchair, and her son was her live-in assistant, but that’s what family does. Yeah, my parents told me my brother was brain-damaged at birth, but he was just my brother. My parents’ idiosyncrasies did not seem all that weird to me because they were my parents, that’s just who they were. I grew up hearing stories of my eccentric and way-more-than-just-eccentric relatives and thought this was normal.

And it was. It never once occurred to me to blame the things I didn’t like about any particular relative (and there are things not to like in anyone, but I encountered things like molestation from a few relatives that are really things not to like, and those relatives did have assorted labels that I somehow never blamed this on) on a disability, or to divide them up into their “good” (non-disabled) parts and their “bad” (disabled) parts. I never felt cheated out of a childhood, despite experiencing some of the things that a lot of people seem to whine on and on about in that respect. (They always assume I’ve never experienced these things. I have. I think differently about them, and hence feel differently about them, than people who believe that there’s a particular ideal that everyone should have lived.) Sure I’ve griped about some of the really screwy events in my family but not in the “poor me I had to have disabled relatives and was cheated by it” sense.

Just as some parents believe they’re entitled to a perfect child (where perfect is defined by some pretty biased standards of perfection, at that), some people believe they’re entitled to perfect (again, pretty biased standards of perfection) relatives in general. That anything less than that is having something stolen from them, and a perfect excuse to feel sorry for themselves (and have this self-pity praised by therapists and sibling support groups and NAMI and the like).

I have to believe that this sense of what the stages of life are supposed to be like, and what people are supposed to be around for others to relate to, that somehow excludes the experiences of probably the vast majority of people on the planet, is relatively recent, and entirely mythical.