Wednesday, June 10, 2015

Functioning Labels

When you use functioning labels what are you trying to get across?

How impaired someone is? What needs someone has? Or is it simply "How different are they from me?"

It's talked about how there aren't other ways to succinctly - and even correctly - identify strengths and needs; yet, is that what you're doing when you are using functioning labels? Is it what you are even trying to do when you really think about it? Are you thinking about which strengths people have, or what needs they have? Or are you only thinking of othering them - how odd are they? How well can they fit in if we're comparing to someone like me? Could they pretend? Do they do things I consider necessary for a normal life, because they're things I want to do; things I think everyone should do? Are you thinking about what they can do? Are you thinking about how much help they should have?

Because how are functioning labels actually used?

There's the IQ > 70, IQ < 70 version which at least gives some information, but that's rarely used by common people. And even then it isn't telling you about strengths and needs. It's telling you whether there is co-morbid intellectual disability. This way isn't about othering... but how much is it common usage? Is it what you're meaning? And does it actually do that "identify strengths and needs" thing which you are referring to?

And there are many other ways that high functioning and low functioning are used.

Verbal vs Nonverbal is one; but then what about partially verbal? What about when someone only speaks using echolalia? What about being completely fluent in a non-speech but word-based communication method? People argue, label, and deny other labels, saying people are "high functioning" to deny need, and "low functioning" to deny strength. Neither actually says how well people communicate. Neither is even used consistently.

What about how much help people need in self-care? I've seen that one as well. Yet what qualifies as self-care isn't even considered the same every time. What qualifies as help isn't always the same. What is considered standard development of children isn't even standard between conversations!

Frequently I hear "high functioning" used if people can see strengths. And "low functioning" if they can see needs. But what about the needs of those who you can see the strengths of? And the strengths of those you can see the needs of? Neither of those are explained at all.

And that even doesn't take into account that no two verbal people have the same communication abilities, no two people who need help to eat need the same help, and no two people end up having the same strengths and needs in general.

It just doesn't tell us what people have for strengths or for needs. It just tells us which stereotypes are being applied today.

The stereotype of "you're just like me" so I expect everything of you, because you must have no challenges, you must never need help. Why? Because you're just like me. Because someone who could hold a job, or even simply speak, is someone who we know can't need aide. You must lie if you speak of your struggles, because impairments do not exist in people who look like me.

Or the stereotypes of "you're so different than me" so I pity you, look down, because you must struggle through life, must not have strengths. Why? Because you're not like me. Because someone who doesn't speak, spins, needs help with being fed, is someone who there's a question of whether their life is worth living, as if that question could be answered by someone besides the person themselves.

There are the stereotypes High Functioning and Low Functioning, not telling us anything about the strengths of the individuals, not telling us anything of needs. Not telling us if people are verbal or nonverbal (because definitions vary). Not telling us if people wander or not (because all sorts of people wander). Not telling us if people can cook, clean, live alone, hold a job, or manage money. Not telling us interests, things people thrive in, whether it is spinning tops, cameras, trains, or Dr. Who. Not telling us strengths, whether it is being able to picture what is being described, an ability to relate to animals, or writing poetry that makes people feel the way they should feel reading such a poem. The labels don't say that. The labels aren't people. And at the same time they aren't descriptors with meaning.

Autistic means something, it tells us things about who we are. It shares information. It lets us relate to ourselves, to each other. It lets others understand more about what sorts of things to expect from someone like us.

But functioning labels don't give that sort of meaning, it doesn't tell us anything, doesn't let us understand ourselves better, doesn't let others understand us better, doesn't let people communicate better about who we are; because there should be no expectation because both parties would have the same definitions.

All we get from functioning labels are "who's better than who?", "who deserves what?", neither of which ends up being true.

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