Why I say "disabled."

[marydell]

When talking about kids with minor physical disabilities, a lot of able-bodied people--teachers, parents, even doctors--will say they don't consider these kids to be disabled, because they can do basically whatever a not-disabled kid can do.  I'm always uncomfortable with this assertion, because I think it's based on an unspoken assumption that "disabled" means "OMG totally fucked."

According to the World Health Organization: 

"Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions.

• An impairment is a problem in body function or structure
• An activity limitation is a difficulty encountered by an individual in executing a task or action
• A participation restriction is a problem experienced by an individual in involvement in life situation

Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives."

As someone with an upper body limb-reduction defect, Charlie inarguably has an imparment.  When it comes to activity limitation, the effect of the impairment is very minor; he has to adapt and develop his own way of getting things done, but for the most part he doesn't need help and when he's an adult I don't expect he'll need any help at all.  He will encounter some participation restrictions when it comes to certain sports, artistic pursuits, and musical pursuits, which will either be no big deal or will be a significant factor in his life, depending on his desires and aptitudes.  If he loves piano and wants to play at a very high level, he will be screwed, but if he loves trumpet instead, he'll be fine. Obviously we intend to direct him into activities that will allow him to participate fully instead of having to deal with impossibilities or near-impossibilities.

So he's not particularly limited, but he is disabled. We absolutely think of him  as disabled; we teach him to think of himself as disabled.  Because there's nothing wrong with being disabled.  And because there's a vast community of fellow travelers out there that I want him to get to enjoy and learn from and join with in activism.  If he decides, as he grows up, that he doesn't think of himself that way, I'll respect that, because it's his identity and he ultimately has to be the one to craft it. But I hope it will be just no big deal to him, that he'll be "disabled" the same way he'll be "a White Sox fan"--something he takes for granted and likes about himself.

Comments

[kalmn.livejournal.com]

i <3 you. okay, bye.

[marydell.livejournal.com]

:) thanks!

Two pairs

[wanderingaengus.livejournal.com]

First the legal -- I've spent a tiny bit of time dealing with both disability under the ADA and the SSA (Social Security Act). The two major pieces of legislation that affect the lives of crippled folks, and they have definitions that are not merely in conflict, but which are clear contraries. Under the ADA, people with disabilities are people who can work if they're given accommodations, and, for most, those accommodations are reasonable. Under the SSA, people with disabilities are people incapable of engaging in "substantial gainful activity."

The other couple:

"Disabled" is a horrible, stigmatized identity, and anybody (especially a kid) who can escape that burden is emancipated.

"Disabled" is an identity for proud folks (http://www.disabilityprideparade.org/home.php) who have mastered external and internal devaluation and who have, some of them, built something glorious.

Re: Two pairs

[marydell.livejournal.com]

Thanks, I appreciate your perspective! So far we've become familiar with the ADA, which seems to govern a whole lot of children's school experiences, but not the SSA. Although I believe my sister received benefits for a while under the SSA before Reaganomics took them away.

Since Charlie has a visible difference, there's no escaping the stigma--older kids (5-6 year olds particularly) at daycare already stare and point and sometimes cringe in fear when he walks by. This is sort of offset by the teachers giving them a little explanation, but that doesn't help Charlie to blend in. We hope that by learning pride and being part of a community with other disabled folks from an early age he can be comfortable with his difference even when other people aren't.

Re: Two pairs

[ma-ee-uh.livejournal.com]

Those kids will stare, point, and cringe way less in 2-3 years.

Re: Two pairs

[marydell.livejournal.com]

Good to know! Right now the kids in his home room don't really notice (they are all 2 or 3 years old) but the morning drop-off room has a wider range of ages, and so he's just starting to encounter older kids regularly without actually getting to know them. His friends & neighbor kids are mostly cool with it, since they've known him since babyhood and had a chance to ask questions already.

One 6-year-old kid in the neighborhood just kept asking questions and trying to grab C's arm all the time, and he has finally knocked it off after us getting somewhat stern with him. He's moved on to saying "is he a Chinaboy?" *sigh.* I didn't even know that was a word.

Re: Two pairs

[ma-ee-uh.livejournal.com]

Well, kids who don't know him might always stare, but the pointing should subside a lot over time.

Ugh, the Chinaboy thing is awful -- nothing wrong with being stern IMO, though.

Re: Two pairs

[marydell.livejournal.com]

Yeah, we are going to have to work on the whole concept of words that are ok and words that are not with this kid, since I suspect his family is not, uh, enlightened.

As for kids looking at his arm, right now we're starting to draw the line at touching it, since some kids will grab it in order to investigate. We're not sure that's a necessary distinction to make at this age since C is friendly and doesn't mind being touched, but it just seems like a bad idea to let kids poke him out of curiosity...I'd be interested to hear your thoughts.

Re: Two pairs

[ma-ee-uh.livejournal.com]

Yeah, the touching thing is tricky. Kids need to learn that they need to ask before touching -- and by that I mean ask before any kind of touching with any person that they don't know well. This is a basic boundaries thing. Similarly, when he is a little older, Charlie can learn to tell people if he doesn't want them touching him (assuming he doesn't, though he may not mind it).

Re: Two pairs

[marydell.livejournal.com]

Thanks, that's a good point. Since he's still just starting to talk, asking probably won't work, but within a few months I think he'll be able to understand and answer. And other kids shouldn't have a problem being told "you need to ask him."

[ma-ee-uh.livejournal.com]

Well, while some might think that the following distinction is meaningless, I think that the phrase "he has a disability" is more appropriate than "he is disabled."

Because yeah, unfortunately, a sentence like "he is disabled" does seem to kind of put the rubber stamp of can't-do-much on the child.

Whereas "he has a disability" first and foremost (a) does not label or define (as wanderingaengus points out, the term really works best as a self-chosen label), and (b) does not speak to the overall ability/identity/functionality/person-ness of the whole child IMO.

[marydell.livejournal.com]

Thanks for your perspective! I don't think it's a meaningless distinction, and if people use people-first language to describe themselves or their kids I respect and follow along with that--however people want to refer to themselves is cool with me. But my personal take is that it adds to the stigma of the word "disabled" if I avoid using it directly the way we use any other medical or legal category. So sometimes I may say "he has a disability," sometimes "he has a limb difference," and sometimes "he is disabled," depending on context.

[ma-ee-uh.livejournal.com]

I guess I can't think of any non-legal or medical reason to use that term, though.

And then even in those contexts is not always meaningful -- for example, my husband is not considered disabled by legal standards even though is hearing loss is somewhat, well, disabling.

I know what you mean about adding to the stigma -- on the other hand, someone using the word "colored" instead of "people of color" isn't going to chip away at the stigma of that word.

[ma-ee-uh.livejournal.com]

* Especially when it's not a POC using it.

[marydell.livejournal.com]

I don't think "disabled" is in the same category as "colored," since "colored" is pretty universally considered unacceptable, whereas "disabled" is not. People-first language isn't universal. "Handicapped" is more of a corrolary, or "crippled" (although that is starting to be reclaimed somewhat). I know plenty of people with disabilities who will comfortably say "I am disabled" and plenty who prefer other ways of talking about it.

I think the stigma attached to the word disabled isn't about the word, in any case; it's about the conditions that fall under the umbrella of disability, particularly the more limiting ones. My sister is treated differently because she looks different and behaves differently from the norm, and that's as true now as it was 30 years ago when she was being called "a cripple."

[ma-ee-uh.livejournal.com]

Yeah, I guess my colored comparison was kind of a stretch.

But I still do see a difference between someone calling themselves disabled and someone being called disabled.

[haddayr.livejournal.com]

I can think of a non-legal reason to use the term: because our society systematically discriminates against people with disabilities, being a disabled person has become as much of my identity as being a woman. I would not compare it to using the word "colored." I would compare it to calling yourself (or someone else) black.

I understand that there is a disagreement among people with disabilities/disabled people on this. Nearly every time I write about being disabled, folks comment, asking me to use "a person with disabilities," which I believe is a)cumbersome, and b)not an acknowledgment of how much it has become a part of my identity.

While listening to my last commentary, my son (who is on the autism spectrum and has Tourette's) heard the word "disabled people" and grinned ear-to-ear, pointing proudly to himself. He identifies as a disabled person. Proudly. Loudly. And so do I.

[marydell.livejournal.com]

*smile*

[ma-ee-uh.livejournal.com]

And again, as a self-identified term, it works.

I guess the problem with the word is that it sounds so either/or -- one is either disabled or ... able.

But as I said initially, self-identified is a-OK with me. I would never tell someone to call themselves something different from what they want to call themselves.

[ma-ee-uh.livejournal.com]

And I notice you describe your son as being on in the spectrum -- you didn't say "my autistic son." That's kind of what I was getting at with my preference for "person with a disability," and for self-labeling.

[haddayr.livejournal.com]

I do sometimes call him 'my autistic son,' though -- in the interests of full disclosure. Probably not often, but sometimes.

[haddayr.livejournal.com]

I hear you on the self-labeling thing, though, and I need to think more about it.

I still think it's about as controversial as 'black' vs. 'african-american,' but I should think more.

I asked my son how he felt about my calling him 'my autistic son,' and he said he felt fine about it, but he's 8.

[queen-nala.livejournal.com]

We are the total opposite. I do not think of Gavin is disabled in any way and would be quick to correct anyone who gave him that label.

Have you read this post?
http://onelittlefin.blogspot.com/2010/05/do-you-know-what-disabled-means.html

[marydell.livejournal.com]

I've read it now...and you're right, while I appreciate your perspective, we are the total opposite. :) I don't think there's anything wrong with being "crippled, sick, immobilized," etc so "disabled" having those particular implications doesn't bother me. The fact that Charlie is less affected than some of his disabled friends, internet buddies, and family is his good fortune, but to me it's a spectrum.

[queen-nala.livejournal.com]

I don't think there's anything wrong with it either, but those words definitely do not describe my very ABLE bodied child.
Agree to disagree ;)

[sabotabby]

This is a pretty great post.

[marydell.livejournal.com]

Thanks!

[haddayr.livejournal.com]

This is SUCH a great post; thank you.

[marydell.livejournal.com]

Thanks!

[unhappytriad.livejournal.com]

Yeah, the 'no touching' thing is important not only from the point of view of manners (where the hell do people, including some adults, get the idea that if you're different from them you're there for them to play with? I'm talking to YOU, idiot strangers who put your paws all over me while I was pregnant!). But also, if/when Charlie gets to wearing a myoelectric prosthesis, you really don't want Junior down the street to run up and swing from it.

Too bad education can't be aerosolized.