If you are interested in being an original person with a unique statement to make and you feel inclined to boldly attach your name (which is apparently A. Nonny Moose) to that statement, here's one that you might want to avoid since it has in fact been made before, on more than one occasion, by clever people just like yourself.
"Get over it! You don't hear Schuyler complaining, do you?"
Ha! Get it? Because Schuyler's a mute and can't speak! That's fucking hi-larious! I can't imagine why the human stain who came up with that one wouldn't want to sign their name to that comedy gold.
Here's the only problem. Schuyler actually complains from time to time. She doesn't open her mouth and say "Man, it sucks, not being able to talk." She also doesn't use her device to say anything like that, mostly because she's still at the developmental stage where she uses her device mostly to identify and question, not express independent thought. She'll get there one day, and if you think she won't at some point use her device to say "Wow, being a mute fucking blows," then you don't know Schuyler at all. Which of course you don't if you're simply an anonymous commenter who is simply trying to be a dick.
Schuyler gets frustrated. She tries to express thoughts that are too complex for her device, and when we don't get it, she sighs sadly or crosses her arms angrily or wails in exasperation. If you think her monster is worse than mine, well, you're right. If you think she never expresses frustration because of it, you're an idiot.
If Schuyler had a blog, what would she say? Well, she's six, so she'd probably just tell you that she's a pretty princess and if you make fun of her, she'll have King Kong kick your ass.
I look forward to the day that Schuyler does have her own blog. She clearly has some amazing ideas she's trying to express, and it will be a wonderful day when she's adequately able to, however she ends up doing it!
ReplyDeleteI bet one day soon spelling clicks for her, like the potty training did. She's going to be the world's best speller, because she'll have so much practice.
ReplyDeleteThe box has a QWERTY layout, doesn't it? Is it at all possible to type quickly on it?
Oh, and what was the arpeture setting on that photo? That is a beautiful shot, and the blurry background is perfect.
ReplyDeleteThumbs up for complaining. Your complaining made me get back on my own meds and start paying attention to my own beedies again so I wouldn't have to have the Goopy Toe like you.
ReplyDeleteFuck people, anyway...
See? If nothing else, I'm an excellent cautionary tale.
ReplyDeleteFor what it's worth, JMO, YMMV, and all that, I read the original comment and until your heated response, the possibility of a mute joke never even occurred to me - and I'm exceptionally good at picking up on stuff like that. The English language has certain turns of phrase that most of us don't even think about - "see what I mean" for "do you understand," "oh look" as an exclamation of excitement, and so forth. Using those phrases contextually does not necessarily mean that one is being cruel; it could mean that one is being thoughtless, or even simply interacting with a person as if their disability were not a factor in the current conversation - relating to a person as an equal, instead of as a disabled person.
ReplyDeleteYou often talk about how cheerful, brave, strong, independent, and so forth Schuyler is - you seldom describe her frustrations as you mentioned in this post. Because of your emphasis on the positive (which I admire) I think it's fairly reasonable that a reader would garner the impression of Schuyler as the - okay, now, see, I just started to do it there, myself. I started to say "the strong, silent type" without realizing the implications of the "silent" part. I guess the "strong, stoic or non-complaining type" will have to suffice, lest I go on your list of people making jokes at Schuyler's expense. I don't think the commentor was referring to Schuyler's physical inability to speak, so much as the portrait you've painted for us, of a cheerful little girl who takes what life hands her and doesn't flinch from it, however unfair.
You seem to look down your nose a bit at people who use "fluffy" phrases - differently-abled, handicapable, etc - and you don't shy away from calling Schuyler's condition what it is (to you and to her, if not to the world at large) - a monster. You'll say up front and openly that she's broken. I am not one who criticizes or questions your choice of words - BUT it does make things a bit curious when you you're so.. what's the word? Pragmatic? In-your-face? Head-on? Frank? about it, but then get so bitter and angry when someone makes what was, in all probability (IMO) a simple slip of the tongue. Well, fingers. (See, there's ANOTHER expression that we use without thinking.) I would never have expected you to be the "how dare you use such an insensitive phrase regarding my daughter's disability" sort - it jars with the rest of the self that you portray here - the self that talks about his daughter's monster, her brokenness, his gimp tag. I, for one, don't think there's anything wrong with those - but it's odd that you're comfortable with those terms, then freak out when someone uses "you don't hear Schuyler saying such and thus" or "like Schuyler, quietly" - using those terms contextually, to accurately convey an overall message.
I understand that the person was criticizing you, and I deeply understand that it's easier to "own" something when it's coming from within rather than being thrown at you from without. But - and I say (type... *sigh*) this with respect - I think you're hair-triggering here. That person was criticizing YOU. Not Schuyler. That post wasn't about Schuyler, or her disa - sorry, monster, at ALL. But it seems like you jumped on the opportunity to MAKE it about her, because of the phrasing - perhaps so you didn't have to deal with the part that was about you?
Schuyler's condition is rare, and most of us will never encounter someone with a similar condition, will never have to go through the mental gymnastics of "how can I phrase this so it won't draw attention to this person's inability to speak?" Lots of us are in our 30s and beyond; we've been using certain phrases for a very long time, and they roll off the tongue (... fingers) and we don't give them a second thought. We aren't USED to thinking in carefully chosen phrases that avoid any hint of reference to physical ability. That doesn't mean that our words are malicious. Thoughtless? Perhaps - but it seems to me that someone who wants his child to have as normal a life as possible would *welcome* people not carefully choosing their words as if they were walking through a minefield.
That poster's words were malicious, sure - but they were malicious TOWARDS YOU. Not towards Schuyler.
The other thing is that, those of us who follow your blog are well aware that even without her BBoW, Schuyler is able to communicate to an extent with you. WITH her BBoW, she has even more of a voice. Just because we know she can't vocalize effectively doesn't mean we think of her as mute or silent. Because of your loving depictions of her, we think of her as a little girl. Who happens to have a BBoW that she uses to order her own pizza.
I could be entirely wrong; perhaps that commentor included other details that you deleted, or followed up with other mocking posts making fun of Schuyler's monster specifically and unarguably. But if that's not the case, if you just assumed that the choice of words was specifically designed to mock Schuyler, I hope you'll consider my words here. Because it really seems, to me, like you're (1) avoiding criticism of yourself by recasting it as criticism of Schuyler, and (2) experiencing heightened sensitivity to common, everyday speech. Which is understandable, but if that's the case, then you need to lighten up on people who take offense when you refer to people with diabetes (i.e. you) as freaks. Because that's just hypocritical.
I'm fairly certain you'll disagree, vehemently, and probably won't even approve this comment (among other things, it's longer than most of your entries here), which is fine - but hopefully you'll read it and maybe think about it. If not.. oh well.
i love "A. Nonny Moose". it's fucking hilarious.
ReplyDeletesarah
www.misanthropic-tendencies.com
And my something to say is simply that I still cannot believe people feel somehow entitled to criticize another's feelings or how they are dealing with a particular situation.
ReplyDeleteMaybe I'm some kind of Luddite, and don't think I don't understand that on some level all us blogger journaller types crave public attention or we wouldn't have blogs and journals that we invite the rest of the world to see, but there's just such a difference in reading someone's thoughts (real or fictional) and disagreeing with them, and in reading those thoughts and feeling somehow obligated to take issue with them.
I particularly don't understand the people who feel empowered to point out, "helpfully," to someone who's hurting or frustrated that they should just suck it up, because so-and-so has it so much worse. It's a personal website, for Pete's sake -- and as karen said, what you see in a blog or a journal is not (surprise, surprise) necessarily all there is to know about someone.
Just because someone doesn't have bone cancer, hepatitis, a goiter and no arms doesn't mean that their diabetes or their divorce or their broken leg or their money troubles or their stubbed toe aren't just as painful and frustrating and mysterious to them, personally, in that moment. You can make lemonade all day long, but sometimes, when it's dark and you're tired, all you can see is a bunch of damn lemons -- why can't that be okay?
Jesus, why are people such fucktards?
ReplyDeleteI know it's too early to tell, but I'm really pulling for Schuyler to be able to use the keyboard function on the BBOW or a regular keyboard someday.
Well, I don't have a disabled child, but I myself am disabled (hearing impaired) and I took offense to the comment as well. The commenter above who said that Rob used the statement to deflect the insult from himself to Schuyler so that he could avoid dealing with his own issue is totally wrong. The original commenter should have left Schuyler out of the equation to begin with and just said "shut up Rob, you are a just an effin whiner...lots of people are diabetic, deal with it". End of story. Bringing in the situation of a defenseless child and making a pun besides? Totally crappy. My mother used to say that everyone has their own cross to bear. We have no place judging other people and how effectively they do or don't deal with the things that life throws at them. How many of the people who read this site would spend their days crying into their shirt if they had been dealt the hand that has been dealt to Julie and Rob with respect to Schuyler instead of getting a kick-ass tattoo and dying a little girl's hair pink? Think about that one.
ReplyDeleteAnd, Schuyler looks rad in pink!
Jam said a mouthful (handful?) when s/he said "Just because someone doesn't have bone cancer, hepatitis, a goiter and no arms doesn't mean that their diabetes or their divorce or their broken leg or their money troubles or their stubbed toe aren't just as painful and frustrating and mysterious to them, personally, in that moment."
ReplyDeleteI have two dead kids and it bothers me no end when people apologize to me because their pain isn't as bad as mine. Pain is pain. Nobody has the right to compare pain. If someone hurts, that person has every right to own that pain and just because someone else may have a different kind of pain, it doesn't minimize your pain in the least.
And as many people have pointed out here, what we read of each other's lives is only the stuff we are willing to share. It is not the totality of our lives. How dare we pass judgement on anyone based on what we do or do not choose to share with the world at large.
I often feel you have given us a gift by letting us share Schuyler with you, by trusting us with your feelings, and by letting us into your life. I would never presume to criticize anything you (or anyone else) does based on the glimpse that you have given us through the Internet.
My life is richer for "knowing" Schuyler, but I also know that I don't really know Schuyler or you or Julie or anybody else who appears in your journal.
If my son were in a wheel chair, for example, these same people would be as politically correct as possible.
ReplyDeleteProbably not. People are assholes.
When I'm out in public (in my chair) I get ignored by cashiers, waiters or talked about. I love it when they talk real slow as if because I'm in a chair, I must have difficulties understanding them as well.
Those who don't have a monster/disability/gimpiness that (or have a child with one) do not know how to react to those of us that do.
Someday, Schuyler will need a "Bite Me" or even worse button. I watch it now with my 13 year old, autistic nephew. He's the size of a grown man (a large grown man) but, mentally about 5 and speaks in an odd manner.
People stare at him, or say rude things about him. Only recently has he started to really realize he's different from other kids. He's too sweet and quiet to say anything but, I so wish that one time, he'd just turn around and be able to tell one of those rude people off.