Words Matter (on “Disability”)
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.
Gray Rinehart
June 13, 2011 @ 11:04 am
I’ve gotten into the semantic argument from time to time, as I said a long time ago that the ADA was badly named. I prefer the term “handicapped,” because we’re all handicapped in one way or another.
Best,
G
Laura
June 13, 2011 @ 11:23 am
Its unfortunately like the old rhyme sticks
and stones can brak my bones but names can never hurt me. It’s not true. Try not to let the words get to you. You love your son and accept him for who he is, everyone
has strengths and weakness. Normal as far as I am concerned is a wrong word for eveyone is differant in one way or another.
As far as the system is concerned I’m disabled and the doctors thought I would not be able to do half the things I do daily like reading. Which is my favorite hobby. Take good care of both you and your boy! Don’t let the turkey’s get you down!
Jim C. Hines
June 13, 2011 @ 11:32 am
I was thinking about that rhyme over the weekend. I had a snippet of dialogue that doesn’t work for anything I’m working on right now, but I’m holding on to it:
“Sticks and stones can break my bones but words can never hurt me.”
“You’ve obviously never found the right words.”
D. Moonfire
June 13, 2011 @ 12:16 pm
At the ICON that you were at, there was a panel about disabilities and the future. One of the interesting things I got out of it was the idea that as we get better at identifying disabilities, we’re going to find that everyone has something. It will become less a disability and more of just “what you have.” Of course, there was a general hope that things like education would be personalized to the point you’ll be taught exactly the way you learn.
Jim C. Hines
June 13, 2011 @ 1:33 pm
I don’t even know what the best term would be. I get that from a legislative standpoint, they need to have some broad, inclusive labels.
It’s weird. As a diabetic, I get some protections from ADA. That doesn’t bother me. But if you asked me if I was disabled, I’d say no without even thinking about it…
It’s a messy conversation and I definitely don’t have all the answers. All I know is that this one bothered me.
Jim C. Hines
June 13, 2011 @ 1:35 pm
I wish I’d made it to that panel!
I do like the idea that the more aware we become of this stuff, the more we’re recognizing that almost nobody gets to hang out at the dead center of the bell curve…
C.
June 13, 2011 @ 1:40 pm
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.
Alas, you sound like you’re falling into the trap of thinking that a person with a disability is a person who is unable to function. People with disabilities do all sorts of day-to-day things every day — do I really need to prove this? Your assertion that your son is not one of those people because he can do things denies the functioning of people with disabilities who are doing things such as, for example, reading your blog today. In fact, a number of autistic-spectrum people do prefer not to identify with the general community or specific political activism of people with disabilities; however, this is generally because the model of people-first disability identification (at least in the US, which is my context and I believe also yours and your son’s) is perceived as separating the person from the disability in a way which does not suit people who feel that their neuroatypicality is a strong component of their personhood.
Jim C. Hines
June 13, 2011 @ 1:42 pm
I was going by the English definition of the word, and suggesting that the definition doesn’t fit.
Michele Lee
June 13, 2011 @ 3:19 pm
My son is ASD too and we struggled to come to terms with it for the same reason. He doesn’t feel, disabled. But then I realized that it’s not supposed to be a judgment on him (though with some people in the school system is has been). It’s stupid, cold data meant to help the school system assess itself, like standardized tests. The kids aren’t helped by the tests at all, and there is so much pressure to perform on them that teachers are forced to teach to the test instead of teach effectively.
Likewise the school system has to find a way to break thousands of students up into information it can digest and understand and make judgments from.
The resistance comes from our own view of “disabled” as meaning “broken, inferior, not capable” which doesn’t at all fit our kids. My son can build a 3d model of nearly any logo from Legos (there are pictures of his Marios and race cars and the 20th Century Fox logo on my Facebook). He can do laundry, take care of a fish tank, didn’t cry when the first fish died because he was too busy holding his sister and telling her it would be okay. He is very very capable, and considering my life is filled with people who have OCD, depression, Dyslexia, ADD, mild retardation, amputees and PTSD most of whom have rich lives which include jobs, families, volunteering, etc I just cannot see how having some miscommunication and sensory issues makes him “broken”. Because we aren’t taught that the disabled are strong people who happen to have a disease. We are taught they must be pitied, sometimes taken care of and even feared (because we might end up like them).
I teach workshops through the city that teach people how to adjust to living with a chronic disease (from diabetes to cancer and AIDS) and the number one issue is them struggling with the idea of being disabled and what it means to them. We’re fed a stereotype and most people don’t even get out of that until their very close loved one or themselves get smacked with the label.
But here’s that important thing that “disabled” means. In the US we have the Americans with Disabilities Act which means that you cannot be denied a job or housing or education becaus of your disability. The school system cannot turn to you and say “We can’t help him” (well, they can, and they did to us, and we damn near had the person’s job for that because it is NOT allowed), they cannot say “I don’t care if he is melting down he hit someone and now we’re kicking him out.” And legally if you’re having story time in class and her wiggles so much he falls out of his seat the teacher cannot legally say “I refuse to teach him” or “He cannot come back to class until he’s medicated into behaving”, and people who suggest he “be locked away with other people like him” like an embarrassing secret are known for the complete jerks they are.
I struggled with the disabled label too, but if it means that he has the right to an education on his terms, and gainful employment and the chance at a family then I can accept it.
SylviaSybil
June 13, 2011 @ 3:36 pm
“Sticks and stones may break my bones but words may break my heart.”
SylviaSybil
June 13, 2011 @ 3:57 pm
Disability is a social construct. I don’t identify as disabled because 95% of the time I have the tools I need to get through my day without a hitch. But when the elevator’s out of order, I have to climb up three flights of stairs only to have my knees give out and fall on my face in front of everyone. If I lived in a society that did not have elevators and expected me to use stairs on a daily basis, I would consider myself disabled. The fact that our society usually accommodates my abilities and not someone else’s doesn’t make me more abled than that person. It’s a reflection of our society’s biases.
I think “disability” is the most generally accepted term, since I see the phrase “PWD/person with disability” often. I don’t know of any better word. Although I do think autism is one of the things that falls under the “neuro-diverse” umbrella.
I have a sister with Attention Deficit Disorder, which phrasing drives me batty because her thinking isn’t disordered, nor is her attention “deficit”. The difference is that she has too much attention and needs more stimulation than others, not that she is lacking attention. Her grades went from D’s and F’s up to A’s and B’s overnight when she transferred to the alternate high school. The two main differences? They let her pace around the classroom during lectures and listen to her iPod during testing.
Joe
June 13, 2011 @ 4:53 pm
This reminds me of the president of the National Federation of the Blind. When the breakthrough was announced over a decade ago that the first computer chip was successfully implanted in a person’s brain, restoring a degree of sight, she said she did not support the procedure or the project and wished it would be abandoned. You see, attempting to restore sight, to her, suggested that blindness was a disability and that the blind were no different from everyone else.
If she needs to argue sameness and difference between the blind and the sighted, that’s her deal. But her fixation on that definition should not inhibit others from getting the attention and assistance they need.
Nichole
June 14, 2011 @ 3:13 am
Hi Jim,
My foster son is high-functioning autistic. “C” is 14, and he’s a smart kid doing his best to figure the world out, but he has some real challenges. As his parent, I have some real challenges too. C just can’t process some things the way other kids in his age group can. He’s been in three fist fights in the last four months. He can’t deal with some teen issues, like bullying and peer pressure. And girls… he has no idea how to deal with girls. We’re helping him, naturally. But C has a hard time controlling his temper and those rolling obsessions are overwhelming.
What I’m saying, I guess, is that autism sucks. C is a great kid. I love him and we’re petitioning the court to make him a permanent part of our family. But autism sucks.
I know “disablility” is a touchy word. C hates that word. He doesn’t like being in Special Ed, and he doesn’t like being different. We care about his feelings and try to be sensitive. I wish we could sugar-coat it for him. But the truth of the matter is that he is different, and any help or funding we can get for behavioral thearapy, respite care, medication, and a mentor is very, very welcome.
I wish you the best for your son.
Nichole
David Y
June 14, 2011 @ 10:03 pm
Jim:
you may want to read Michelle Sagara’s writing on having an ASD son.
http://msagara.livejournal.com/
Jim C. Hines
June 15, 2011 @ 7:28 am
I’ve been following Michelle’s LJ for years 🙂