Words Matter (on “Disability”)

[jimhines]

My son’s IEP (Individualized Education Program) meeting was last week. This was his second IEP, and I wasn’t able to make it to the meeting. So I came home and read through the paperwork, reviewing the plans and ideas for next year, when he’ll be in first grade.

Overall, his school has been wonderful. They confirmed our gut feeling about his autism

Comments

[dionysus1999]

Among the adult autism spectrum community they use the term neuro-typical to refer to the rest of us.

Guess that means they are neuro-amazing!

When you get right down to it, I suspect none of us are as neuro-typical as everyone else thinks we are. Normal is just a statistic. ;)

[jimhines]

It's been fascinating to watch the way he thinks and behaves, and to see the similarities to myself. In a lot of ways, he reminds me of me, just taken to more of an extreme.

Sometimes it's a good thing. He gets incredibly frustrated by changes in routine, and that's something I can relate to, so I think I have an easier time talking to him about it. I don't know exactly what it's like for him, but I'm able to empathize a bit, if that makes sense?

[andi1235]

In our house we've coined the term "autistish" - not diagnosibly on the autism spectrum but having characteristics in common with people who are diagnosibly on the spectrum. It's very common for parents of children with autism diagnoses to be autistish. :)

I think that in general it's preferable to think of autism as a difference rather than a disability - but it's also important to address any specific issues which are acting like disabilities for the person with autism.

Also, incidentally, I have a friend with Aspergers who NEVER stays totally still. Mostly it just affects him in that he can eat anything he wants without gaining weight because his constant fidgeting burns so many calories! :)

[comrade_cat]

There is also a movement in the AS community to see autism/Aspergers as a difference, not a disability. There is a t-shirt that has a drawing of a cute cat and text that says something like 'This is a cat. This is not a defective dog. Autism is a difference, not a disease.'

From what I've read, a number of people on the spectrum also have some other disorder such as retardation (not sure if this is the polite word now, but I don't know a new one), and I think that is part of why the image the public has is of someone so disabled. That and not being able to talk, whether it's a blanket or selective thing.

[jimhines]

We've got some things we do, and others we plan to try. Gum wouldn't really work, since most of this is bedtime reading after he's brushed his teeth.

It's not a huge problem, except when the cat tries to curl up next to us. And the cat is learning to avoid J's feet. Mostly, to me, it's an example of where the autism is clearly affecting him, but it's not disabling him or preventing him from doing what he wants to do.

Except when he falls off the couch :-)

[beccastareyes]

As an adult on the autism spectrum, I'm the same way. I take notes or doodle* in class/meetings because it gives my hands something to do that either is directly related to what my brain is doing, or takes only a bit of processing power. I also get up and walk around the hall a lot while at my desk -- to the point where friends once nicknamed me 'squirrel' for being unable to sit still, especially when thinking deeply, and I developed a reputation for being a false alarm for folks' advisers (that is, at least two students told me my walking sounded like their advisers coming to check up on them. They didn't even have the same adviser, so go figure

[zornhau]

I'm afraid that I don't think you can win with word substitutions. "Gay" for example has become an insult, and I've heard "Differently Abled" and "Mentally Challenged" used in the same way (with hand quotes).

What the correct etiquette should be, I don't know.

However, many of us carry all sorts of minor disabilities.

Perhaps the school should have said...

"...progress in the general education curriculum with the rest of his peers/classmates…”

[jimhines]

I'm not sure what it is you think I'm trying to win. I'm aware that "gay" is frequently used as an insult, and that people will continue to make short bus jokes and otherwise use terms describing mental and physical difficulties as insults. But that's not really what I was talking about.

Sorry that came out wrong....

[zornhau]

Sorry. That came out wrong, possibly due to a British turn of phrase, but mainly due to me tripping over myself.

What I was groping ineptly towards was the feeling that perhaps it's not the terminology itself that is offensive or unfitting, but rather the reduction of people into the binary categories "disabled"/"non-disabled".

A child with autism "has a disability" from an administrative point of view (databases and budgets), but that doesn't make them "disabled", the term is too reductive and too imprecise.

Presumably an autistic child's needs are different from those of the kid in a wheelchair, and different again from those of the blind child. And all three children have needs that are nothing to do with disability.

Of course a disability hinders, but it does not define a person, and it should be the job of schools to know this.

Re: Sorry that came out wrong....

[jimhines]

Okay, that makes sense, thank you. (And as I said below, I'm obviously far from objective about all this, so it's also possible I'm just not reading clearly.)

I don't think it's the binary division that was upsetting to me, though I agree that's a problem. Going off of your comment, "special needs" seems a bit more on-target. My son definitely has some needs that aren't shared by other students. They don't disable him, but they do need to be addressed. (And they definitely make life interesting sometimes...)

[temporus]

I agree, there needs to be a different operative word. I just had a discussion this past weekend with my mother where she told me she chose not to have me tested as a child and classified because she didn't want me labeled as disabled, or retarded, (the only labels she knew of at that time) because she knew that wasn't me. The point is that labels matter to people, and people make choices because of labels.

There certainly are folks on the autism scale that I would consider disabled. My niece is one, but she has both autism and down's syndrome. But it's such a broad range, and I know many on the spectrum I would never consider disabled.

The closest I could say when considering one of these issues that involve fairly broad scales is that some people are affected by it, but not disabled by it.

[jimhines]

"There certainly are folks on the autism scale that I would consider disabled. My niece is one, but she has both autism and down's syndrome. But it's such a broad range, and I know many on the spectrum I would never consider disabled."

That makes sense to me. There's such a range, and not everything really qualifies as disabling.

I get that the school needs a way to categorize and track students who need extra accomodations through special education in order to help them get through the school day, and my son does need that right now. But I don't see that as disabled.

I don't know. It gets messy the more I try to think about it in depth. Is "disabled" defined in relation to one's ability to live a "normal" life, and if so, who defines normal? I know there's a lot of discussion and debate about all this, and I'm not in the center of that discussion, so there's a lot I don't know.

All I know is the word feels wrong in this case.

[temporus]

I'm inclined to agree with you about the word, even as I can't come up with a better alternative. Best I can think of is atypical, but I don't know how that one pans out.

I guess so long as the school helps your son succeed that is the most important thing. But I understand your frustration, and I don't think it unreasonable.

[kk1raven]

I'd say that something is a disability if it noticeably interferes with the person doing what he or she wants or needs to do that the average person would be able to do. Categorizing everyone who has any type of disability as "disabled" doesn't seem right though. That's defining them by a single characteristic that may or may not be very significant to their life as a whole. Sometimes someone is disabled when considered in a specific context, but not in general.

[snapes_angel]

What's wrong with being a fussbudget, anyway?