Seeing Disability

[lollardfish]

Some of the literature I've come across on "difference" - race, gender, sexuality, class, and so forth - has talked a lot about gaze and vision. This is English professor land, a place where mild-mannered medieval historians fear to trade. I don't remember much of it (this was as an undergraduate). I think I "got it" at the time, but I've since filled my mind with very different types of thoughts and analysis.

Anyway, I've been thinking about disability and my vision.



I don't see my son as disabled. I've said this before, back in March, and I still feel that way. One could credit this to the fact that he's my boy, I love him, and see him only as my boy. Or, one could credit the fact that his extra chromosome has given him the typical down-syndrome facial characteristics in way that has made him astoundingly cute (or so all the world thinks). He does not have any of the exaggerated characteristics, and he's strong enough to avoid the extreme floppiness. Or, we could look to the fact that he's strong, healthy, developing at a "neurotypical" (my word of the week from a DS discussion group) pace, more or less, curious, clever, physically solid, and generally an all around easy, fabulous, baby. There's no ability for which he yet seems "disabled," although I'm sure we'll encounter speech delays, reading delays, and so forth. I'm pretty ready for them right now.

I do see my son as a boy with Down Syndrome, part of an enormous population of children with Down Syndrome, all of whom share some physical characteristics, and many of whom I am coming to love. It is a different look, I see it in my boy and the other children with whom we play, and it's come to be something extraordinarily beautiful to me. And I think, "Hey, look, Nico's made me a better, more accepting, person."

But I still feel the twinges when I see non-Down Syndrome people with disabilities (boy, what a terrible phrase!). Thoughts of - should I make eye contact and show that I am accepting? Should I just go about my business to show that it's no big deal (that someone has, I think, cerebal palsy, or someone else has a deformed left side)? We were at a center with horseback riding lessons for disabled children as well as a dozen other programs (neat place, dunno if we'll be able to afford any of it in the next 5 years), and pictures of the students were on the walls. I wanted to just see them as people, as children - but I saw their disabilities.

My son has Down Syndrome, but he's just my son now. It's how he looks. The other children I know are just the children I know. I can't, quite, get my brain to accept this universally, to make all people, in my gaze, just people - and then demarcate, if I must, their differences..

But I'm working on it.

Not my clearest of ramblings, but, they're my ramblings. Get your own!

Comments

[kalmn.livejournal.com]

The other children I know are just the children I know.

i think this is the key. it's about what you have had exposure to, and is therefore "normal" to you. i don't think it's possible to get there so that you see the whole world as people, but it's a good goal to strive for.

my general feeling is that i like it when people smile at me, so i try to smile at people. i like it when people notice i am having trouble with something and ask if they can help, so i try to pay attention and ask people if they need help.[1] that sort of thing.

disabled is a very clumsy word. i use it, but i don't like it. when talking about myself i will usually say that i have bad knees or that i'm limpy, both of which get my point across pretty well. but if i'm talking in general, disabled people or people with disabilities seem to be the best general terms.


[1] speaking for myself and on behalf of other disabled people i've heard say similar things, for the love of little green apples don't help without asking if you can help and if so what you can do. sometimes the thing to do isn't obvious, sometimes i'm having a crappy day and just want to be left alone, etcetera etcetera.

[laurel]

It's tricky stuff, but interesting.

I've been thinking a lot about language, after I heard someone say that their child "has autism" but is not "autistic". Very strong preference for children to be referring to as children who have a disorder, not be characterized by the disorder. Totally makes sense to me.

And on a different day I found myself offended when I saw "suffered from" being used along with Down Syndrome and Autism someplace because that isn't the right way to say it. Yes, some people suffer and it's sometimes a direct result of a condition or disability or something along those lines. But there are also plenty of people living with these things who aren't suffering, they just face some unique challenges. So if you're gonna make a blanket statement about a group "suffering" you'd best be careful, I think.

But then I think about language more than most. And also about exceptions to stereotypes and such.

[minnehaha.livejournal.com]

"I keep forgetting he's black."

K.

[madtruk.livejournal.com]

GUFFAW

Man, that's so funny my side hurts. You ruined a perfectly serious moment here!

[lollardfish.livejournal.com]

Is that from something I should know?

[madtruk.livejournal.com]

K will have to tell you-me, I'm just reminded of Gene Wilder waking up in prison in Blazing Saddles:

Cleavon Little: "Are we awake?"
Gene Wilder: "I don't don't know. Are we...black?"
Cleavon Little: "Yes we are."
Gene Wilder: "Then we are awake."

So, my laughter may have nothing to do with where it originally comes from, but that's where it sent me. A tragic, Mel Brooks moment for me...

"should" is a such tricky word....

[minnehaha.livejournal.com]

I am pleased to have give madtruk a good laugh, but I was not in fact thinking of _Blazing_Saddles_, but of an episode of "St. Elsewhere," where someon makes an insensitive remark to Denzel Washington's character, who responds with something to the effect that the other person is a jerk for not being more aware of his circumstance (in this case the fact that he is different from the others because he is black).

And the first guy says.....

What I meant was that sometimes we can avoid dwelling on the unique circumstances each of us has (age, race, gender, ability), and instead focus on our common humanity, our common ground.

I don't think this is easy (in fact I think we're genetically inclined against perceiving "different" as "OK") and I admire how you see this come and go in yourself.

K.

Re: "should" is a such tricky word....

[lollardfish.livejournal.com]

Ah, Denzel. such humble beginnings.

Thanks.

[cakmpls.livejournal.com]

I think that I went, somewhat, in the opposite direction. Being around my kids, who have disabilities, made me more aware of various kinds of disabilities--especially the ones that aren't very obvious. That in turn has strengthened my apparently inborn inclination to recognize that people--all people--are indeed different from one another. And that actually strengthens my recognition of common humanity, because it makes the pool of characteristics necessary for the label "human" smaller.

Or something. Does that make any sense at all?

[lollardfish.livejournal.com]

Yeah. It makes more sense than my ramblings, to a significant extent.

[neogrammarian.livejournal.com]

Aw man, you invoked The Gaze. Which isn't really vision, but more an ideological attempt at colonization.

And while you might certainly, usefully, write about the gaze when writing about disability, you will find that in doing so you reshape your argument quite a bit from the way you present it above.

The trick is to identify the construction of your gaze (which is what it looks like you're working at) and determine (as far as is possible w/in a single cultural location) how you want to change it.

erm. sorry. went all Eng Dept on you. my apologies.

[lollardfish.livejournal.com]

I told you it was a job for an English Professor and that my memories of such things were dim and fuzzy!

[neogrammarian.livejournal.com]

lol I know- but as we were saying about Chretien last night, you're in luck! You're friends w/an English professor! : ) (Well, ok, prolly more than one, but still : )

(The more I think about it, the more I'm getting interested in that Chretien project for this coming year- pausing a year as I wind up one book & get the next moving couldn't be -that- bad, could it? Do the Chretien piece, an Anglo-French segment for another friend of mine's webproject, and get the Muppet article out? Could a year of little pieces hurt?)

[lollardfish.livejournal.com]

Little pieces are good as long as there's a big piece. They flesh out the CV in a nice concrete way, and also - some ideas are worth doing, but aren't book-length ideas.

It'll be fun to learn how to collaborate.

[txanne.livejournal.com]

Ooh, Chretien! What are you doing with him? Besides admiring the way he's made of awesome, I mean.

[lollardfish.livejournal.com]

I have a thought about Chretien and Flanders. NeoG, conveniently enough, reads Old French. Together we shall form Voltron.

[neogrammarian.livejournal.com]

Actually, you might be a better collaborater than I, since I've never done much w/Continental lit, just weird OF dialects!

[lollardfish.livejournal.com]

Or at least a reader of our product when done.

[lollardfish.livejournal.com]

I guess what stuck with me was the power of one's own perception to influence the shape of the world, not only one's own internal world, but also on the recipient of your vision. Or something.