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 last year. They tested and found that he was “high-functioning,” but definitely on the ASD scale. They’ve been more than willing to work with us and with him. I’m very happy with everything they’ve done and continue to do for my son.

But as I was reading through the IEP paperwork, I came to the end where it said, “J will have full involvment [sic] and progress in the general education curriculum with non-disabled students…”

With non-disabled students. That line hit me hard, and it pissed me off.

I don’t think of my son as disabled, but the state of Michigan does. I work at an education department. We collect student data for the state, including disability information. Autism Spectrum Disorder is code 15 in the Primary Disability Field of the Special Education Component in the Michigan Student Data System.

It’s not the school’s fault. They’re using standard terminology. And I’m left wondering whether my angry reaction is my own problem, a kind of denial over wanting my son to be “normal,” whatever that means.

I don’t think so … I just don’t think he’s disabled. Dis- is a prefix implying negation or lack, and believe me, this boy has no lack of ability. Strengths and weaknesses, definitely. But he’s not unable to function.

Differently able, maybe. Which I’m sure makes some readers roll their eyes at the “political correctness” of the phrase. But words matter to me, both as J’s father and as a writer, and “disabled” feels like the wrong word.

And yet … there are things he’s unable to do. Nothing that interferes with his day-to-day functioning, but you should see him when I’m reading him the Oz books. The boy cannot hold still. It’s a stimulation issue. The other night, he wiggled so much he fell off the couch. (There was much giggling after this.)

But this doesn’t prevent us from reading the books. It doesn’t stop him from going to school, playing with his friends, or roughhousing with Daddy. Are there challenges? Sometimes, yes. Is he “disabled?” Not by my definition.

I meant what I said about how great the school has been. I know this wasn’t intended as any sort of slight against my son. Just like I know my coworker doesn’t mean anything by it when she dismisses things as “retarded.”

But words matter. They shape how we think about things. How we think about people. I don’t think “disabled” is a bad word.

It’s just the wrong word.

Mirrored from Jim C. Hines.

Comments

[georgmi]

In addition to the issues you raise, "non-disabled" is just a dumb way to refer to the rest of the student body.

"Mainstream" would probably be a better choice.

[jimhines]

That would probably fit better.

Just an odd sentence overall...

[rydra_wong]

Hrm. I have a question (speaking as someone with Asperger's who does identify as disabled): do you think anyone is "disabled"?

This isn't rhetorical -- I'm not clear from your post whether you feel it's an unhelpful term to apply to anyone, or whether you feel that there are disabled people*, but that Jackson doesn't fall into that category.

Dis- is a prefix implying negation or lack, and believe me, this boy has no lack of ability. Strengths and weaknesses, definitely. But he’s not unable to function.

The thing is, that's true of all the disabled people I've ever met, including people with unambiguous "disabilities" like needing to use wheelchairs, and people with severe autism who are considered "low-functioning" (but who can be smart and playful and passionate and all sorts of other fine things).

No-one's an inert entity who doesn't have any kind of positive quality or ability, you know?

I understand if you feel his issues are mild enough that you'd rather not call him "disabled", but IMHO it's important not to inadvertently stumble into saying "he goes to school, he has friends, he reads, he is generally awesome, therefore he can't be disabled because disabled people can't do any of those things."

Apologies if this is offensive or crossing appropriate boundaries, but it made me go hrm and feel uncomfortable and I wanted to explain why.

{Contextual note: I'm in the UK, where people often use "disabled person" where North Americans would use "person with disabilities." Some people prefer it as an allusion to the social model of disability, where someone is "disabled" not by their individual limitations but by whether or not society accommodates those limitations.}

[jimhines]

Nothing to apologize for. They're good questions, and have come up on the LJ post as well.

You're right that "unable to function" isn't helpful. It's too broad.

Going with my own definitions, which I'm (obviously) struggling with, I do think "disabled" is an appropriate label in some cases. My wife is (in my opinion) close to that point, due to ongoing degenerative bone/joint problems.

Hrm... I've obviously got some sort of line in my head beyond which "disabled" feels more appropriate. I'm not 100% sure what that line is though. The first thing that pops to mind is the ability to fully participate at school or a job, but that's ridiculously narrow and inadequate. Leaving me with ... I don't know yet, but I think it's part of what I'm struggling to sort out.

I do like and appreciate the model that acknowledges both the challenges and limitations of the individual but also the societal context in determining disability...