[Written on an e-mail list in response to a parent who asked about independence. Functioning labels were brought up.]
I’m not fond of functioning labels at all; they have no official definition (the closest is how “high-functioning autism” is used in studies, which is “IQ>70.” But IQ tests measure how well you “function” in a very controlled environment that isn’t like real life at all. And they are especially lousy measurements of intelligence in autistic people).
I do some things really well and some things really badly. Which ones you see depend on what you’re asking me to do. And how much higher or lower functioning I look has a lot to do with my environment. In school, I could do a lot of things one expects students to do–analyzing information and writing papers about it, for instance. But I cannot drive, don’t know where many things are around town (and was only able to really start going places alone after college), and need special teaching and support to learn many non-academic things. (And some academic things as well, but far fewer of them). In an academic environment, I appear “higher-functioning”; outside of it, I appear “lower-functioning.” Even though there are things I really hate about the academic environment and much prefer living without them. And even though I really enjoy some things about the “real world” that I have trouble with and don’t appear to do very well.
Knowing how I operate, I feel it would be incredibly dangerous for me to drive a car Plus, I have no interest in it whatsoever. I would much rather get around in other ways.
My mom drives me places a lot, but I mind it more than she does. (I’m introverted in both senses of the word, and really like doing things alone, when I can). She’s taught me how to walk to a couple different places around town. But for many things, we either go together (e.g. grocery shopping), or someone drives me (e.g. to a friend’s house–sometimes it’s my mom, sometimes it’s my friend).
Where we live now is much less accessible to me than where we lived before. We used to live in an apartment with strip malls on either side of it; walking in a straight line, you could get to Blockbusters, the Apple Store, the used video game store (where I volunteered), a bunch of fast food places, etc. Now we don’t have many strip malls near our house (which is the house I grew up in, oddly enough–we moved back to it), and there are really busy streets with no lights. Not to mention that we used to live in Florida, where the weather was good for walking year-round. Now we live in Nebraska, where it’s boiling hot in summer and freezing in winter.
I’m totally uninterested in boys, too–and girls, for that matter. I know of some NLDers who developed sexual interest later (e.g., sometime in their 20s). I’m 28 and haven’t yet. If I do, that’s fine. If I don’t, that’s fine too. Marriage doesn’t appeal to me; having a family does, but I’m totally open to what “family” could be. Having a romantic partner with kids or without are two kinds of families. They aren’t the only two).
I will always need a support system that differs in some ways from most people’s support systems. (Everyone–disabled or not–has a support system. It’s just that some supports are generally considered “normal,” and others are not). My support system will have some things many people don’t need, and not have some things many people do need (e.g. I won’t need an auto mechanic, for example. Or a babysitter). All of us depend on other people, and other people depend on us. I volunteer writing reviews of video games, and proofreading other writers’ reviews. The review team depends on me to do these things. My mom depends on me to help take out the storm windows and put them back in. Etc.
But like I said–I don’t do some of the “big” things that our society expects adults my age to do. I’m not employed, but lucky enough to not to need to be. (I hate calling it “luck,” though, because my dad died for it to happen). I live at home; I am unable to live what our society counts as “alone,” partly because my environment is missing some supports I would need.
All this could change at any time. I could learn a new skill, or several. I’d like to learn online banking eventually, but my mom doesn’t know how to do it and she’s afraid I’ll get hax0red because, dude, you’re putting lots of private stuff–to do with money!–on the Internet. (Which reminds me: while there are supports my environment is missing, there are also supports my environment has that it wouldn’t have had at some other time in history). I could find a work environment that would work for me. Maybe somebody’ll pay me good money to proofread or write things; maybe a business will come along with an atmosphere that’s good for me and where the people will have no problem with me working the way I work. The video game store where I volunteered was like that; they gave me the support I needed to work there. I always needed someone to show me how to test Game Genies and RF cables at first; but once I understood it, I was good for the rest of the day. I’d forget by tomorrow, but still.
“Independence” does not exist. We are all interdependent, and each of us have different needs.
Truth. All truth. 🙂
And, i think, not necessarily “self-narrating zoo exhibit” if its purpose was to enlighten/give hope to someone else’s personal situation. I think that’s a very different purpose from simply satisfying non-disabled people’s curiosity in a self-objectifying way (which is what i generally use that phrase to mean).
Lots of parallels with me too – it really strikes me that UK town/city planning is a LOT more accessible than US (ie, if you’re in a town or city, as opposed to a rural village, you’re almost certainly within half a mile of a corner shop and within a mile of a supermarket, and to have reasonably frequent, if not necessarily *fully* accessible, bus transport to your nearest town/city centre… and it’s not assumed that *everyone* drives)… which means living alone is no problem for me here in the UK, but could well be in (at least parts of) the US…
[…] More from the category of “most irritating”  from Tera at Sweet Perdition, who writes about her disdain for functioning labels. We agree, they do suck royally. […]
Tera,
Came to this post via the disability blog carnival, and found it to be totally right on in so many ways! Functioning labels as they are usually used don’t tell us much about the whole person, and I am one who’s had so many people totally misinterpret my degree of limitation imposed by NLD (in either direction, actually…and both were completely a disaster) that I tend these days to go on my own previous experiences as a guideline. Like I said on the listserv, I’ve been extremely lucky with this new job in that they know the details and are still willing to be patient enough to work around the various “glitches”. But I have come to know people all over the “functional” spectrum with the same diagnosis, which proves it’s not spectacularly useful.