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January 7, 2008

SCHUYLER'S MONSTER: On Language



Transcript:

Rob: You know, one thing I have taken some heat for in the past, and will again in the future with this book, I'm sure, is the fact that I don't really have much use for "gentle" or "correct" language where disability is concerned. And I know that's very important to some people. You know, terms like "special" or "challenged" or "differently abled" instead of disabled. And I understand why that's important. It's never been a good fit for us. I refer to Schuyler as "broken" and her disability we refer to as her "monster". So I guess it's different for us.

I guess the thing that I don't understand completely is, how that type of gentle language helps the person with the disability. I suspect that it is more for the rest of us, the rest of society. It helps us integrate them and deal with it, deal with something that's hard.

And I don't know that it should be easy, actually. I don't know that it should be something that gets to be sugarcoated, because it is difficult, and the things that these people go through every day, it's not something that we should easily deal with. It should be something that we're always aware of how hard that is.

You know, in the past, people have asked me, they'll say "How do you think Schuyler will react one day when she reads that you thought she was broken?" You know, that she'll take some offense at the kind of language that we've used. I don't think she will react at all. I certainly don't think she'll be surprised. I don't think she'll feel like she's been deceived all this time.

We are very straightforward with Schuyler about her disability, and she fights it. She brings the fight every day, without any illusions, but also without any expectations that there's something that she can't do. She knows what she has to fight, and she knows that a thing that is broken is a thing that can be fixed. And a situation that requires this kind of work, she's exactly the person to do that kind of work.

So I think if Schuyler reads that one day, she's going to know that I understood, and I cared. I loved her, I loved her enough to take up this fight with her.
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2 comments:

  1. Lene Andersen2:04 PM

    I'm of two minds on the terminology. I agree that the experience of disability shouldn't be sugarcoated because you're right - it's the other (ablebodied) people who can't handle the reality. I'm better with the honesty now - I used to hide the "ickier" side of my disability and have only in the last few years realized how bleedin' exhausting that is. So yeah. Let's not pussyfoot around it. However, there's a big but and it has to do with the AB reactions. Showing how hard it is tends to make people all flustered and kick into "you're so BRAVE!" mode or, even more vile, "I feel SO SORRY for you!". Showing the reality makes people pity you, makes them see only the hard, the disability. Which is incredibly offensive. I started "hiding" the icky bits because I wanted to be seen as ME, not the poor cripple in the chair and have fought tooth and nail for decades to be seen as just another person (with extra equipment). So I don't know how to balance those two factors. Of course, it shouldn't be my problem how moronic ablebodied people are, but it IS my problem. Because my ability to negotiate the world depends upon the rights and opportunities allowed me by the majority and when the majority feels sorry for you, it limits said rights and opportunities.

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  2. ysabelkid1:52 AM

    I learned to toss the sugar-coating when I met my ex, Deafboy, and his borther, JC, have Retinitis Pigmentosa with Usher Syndrome B. They hate people treating them with kid gloves just because they're deaf and going blind. As far as they're concerned, they're just people who happen to have disabilities. Same with my partner, MadCat. He has temporal lobe epilepsy. He's not afraid to say it's a mental disability, and that it makes him different to someone with a "normal" brain - crazy but interesting. He has no problem saying when he's had a seizure, or discussing what it feels like. It's certainly put my circle of friends at ease, knowing they are expected to just be themselves around both Deafboy and MadCat. It's given many of them a different view about the disabled.

    I've noticed that those people I know with some form of disability (and there are more than just the three mentioned above), absolutely HATE being treated as though they're so different, they must be aliens. They hate being coddled and talked down to, as so many able-bodied people tend to do. They have to fight hard for their place in society, be it in a personal or work setting, or any other social interaction.

    I've had an able-bodied woman stage-whisper to her friends that Deafboy "must be so drunk he can't walk", when leading him out of a restaurant through the maze of tables. My friend Ferret is often referred to as "crazy" - and not in a good way - because she's bi-polar; but because it's a mental condition, she's expected to just "pull up her socks" and "act right".

    So many able-bodied people just don't get it. They're afraid, and they try to deal with that fear by using pretty words and then turning a blind eye, after they've done their best to send the "differently -abled" somewhere out of sight.

    I count myself as one of the lucky ones, who knows differently because of my contact with strong-willed disabled folks and their mentors. It's partly why I was drawn to your site.

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