Wednesday, June 20, 2012

Things you Discover When your Brother Doesn't Talk

Hey there, hi there, ho there, Internet! How was your week? I've gone ahead and wasted another week punching banjos and kicking arugula in the face because seriously; arugula can go to hell. It killed my whole family and danced in their blood...

Moving right along.

I've realized lately that I'm not really a fan of my own writing; I've been taking shortcuts to meet my deadlines and getting sloppier with them as I go. This won't do at all. It's not good for you, my faithful readers who are gracious enough with your time to take a moment to read my posts, and it's horrendous for me, as a writer, to let that keep happening, so I'm going to start taking steps to ensure my quality level stays up to the same standards I keep for other people. For starters, I'm going to start writing earlier in the week to make sure I've got the time to proof and refine it. This might (I repeat, in italics, might) result in me writing more often, maybe even doing something crazy like doing bi-weekly posts, instead of just weekly. That'll depend on how my school schedule looks next semester, but I was going at a pretty good clip last spring, so it's not out of the question. 

So that's good for any of you who may have noticed me slipping recently. Other than that, nothing's really newsworthy from me, personally. I did come across some stories like this awesome dad who had his kid's nursery designed around Zelda and EA games giving some huge discounts on their games after ripping on steam for giving huge discounts on games.  

OH! WAIT! There is one bit of news; There will be a SSSBP this weekend! Hooray for that! It's going to be one of three things and I haven't decided which yet, but I'm super excited about all of them so it should be good, regardless. Be excited! Tell your friends! Get them excited so that everyone can be let down at the same time when it's just 2500 words about Old English!

It's not going to be about Old English, you can relax.
As for this week's topic; I'm sorry to disappoint anyone who came here for funny stuff. Funnies will not be the focus of this week. Neither will science. Sorry. I'm not saying there won't be funny stuff, there might even be a little science (just a little though, it really is a human interest piece), but mostly this is one of those "People stories" you see in like Reader's Digest or something. Or maybe not. I wouldn't know. I just skip around to all the jokes.

Things you Discover When your Brother Doesn't Talk

Many readers might be unaware that I have a brother. His name is Andrew. He was born when I was four and I don't remember going through much of the "Vying for sibling attention" when he came home. That's not to say it didn't happen; I was four. For all I can remember, I may have had an entire parade come through my house wearing nothing but Rocky Horror costumes. What I do remember is my mother sitting down and talking to me about how my brother was going to be different and that she would need a lot of help with him and that they were going to have some machines in his room for a little while.

Then I remember those machines going off and scaring the holy hell out of me, but that doesn't really mean much to the story. They were loud as hell though, let me tell you. 

My brother has Downs Syndrome and Autism and has never said a word in his life. Sometimes I hear people refer to him as not being vocal and that's not true; he's vocal. Me, my family, and everyone in Olive Garden can tell you that. Dude makes more sounds than I think are technically allowed by the human physiology, but no real words. He's nineteen years old and my mom is still holding out for that, but frankly; I'm not holding my breath. Aside from the obvious language and computational barriers, he's also flat-footed, has little manual dexterity, and is just kind of a small, frail guy. 

For any of you who are having trouble with a mental image, that's on purpose. For safety reasons, I've had any references to his image obfuscated by a circle of mages working full time to bake your noodles. If you're determined though, just imagine an albino howler monkey and you're halfway there.

Yes, I know that's not a howler monkey. Albino Howler Monkies are hard to come by. Get over it.
For some reason, there's a lot of hanging up around the whole "Doesn't talk" thing. Simply saying it doesn't do it for most people, they try to make sure that he really can talk, but maybe doesn't know many words. Even when it does get across that he doesn't talk, they try to tell him how to do things like they would with anyone else instead of showing him, people try to explain to him how to stack blocks or open doors and it's pretty funny from this end, actually, because they might as well be talking to themselves if they're not giving a visual aide. My brother does not talk, nor does he understand speech barring a few key words and phrases. Enunciation, grammar, syntax, and language as a higher idea are, as far as we can tell, totally beyond him. Despite him not knowing much in the way of words though, we've had to learn plenty as a byproduct of existing next to him. 

One of the first things you have to wrestle with when you've got a special needs member of your family is the lexicon. The medical term is, of course, "Mental Retardation" But you even start to say a word that begins with the 'R' sound around special needs parents and you'll find yourself in a room of people ready to literally pounce on you. Personally, I've never felt that way about the word because, like nearly everything else, it's the intent that matters to me more than the phonology, and I even used it indiscriminately once upon a time before I found more creative ways to call someone "A Fucking Moron" but I understand why people get uptight about it. Despite how everyone reacts when I say my brother is how he is, there is some pretty startling prejudice against special needs people, especially as they grow older and less adorable, not unlike a pet monkey. 

I really need to stop making monkey comparisons. I'm going to get in trouble. 

But that's sort of how the special needs community is. Not the monkey thing. They live around a small series of euphemisms because, quite frankly, most of the legitimate terms have been turned into slurs, either real or perceived and tiptoeing through that can get really tiring sometimes. It always comes back to those words though: "Special needs." For some reason, I find myself really disliking that phrase. Maybe because it's so much of a cardboard facade we've drawn ourselves into, maybe because it's a forced community standard and to call it anything else is frowned upon, maybe I just don't like the way it sounds (probably that one) but I keep trying to find new ways to say it, with varying results. 

While we're speaking on the community surrounding special needs people and causes, you really do almost immediately become just that; part of the community. There's support groups, school groups, lobby groups, lady's lunches, community events, fun fairs, all kinds of things that you can use to help your situation, personally and at large. The thing about this community is that it's not like a football community or comic fans community; you don't really have a choice but to be a part of it. Obviously, you can choose, to great effect, your involvement in it, but you will forever be a part of the "Special Needs Lobby" if only quite by accident. 

Now, there's this interesting little effect that happens when you're part of a group that's large enough to be stereotyped but not large enough or recognized enough to debunk those stereotypes simply by existing. You're immediately and justifiably presumed to be totally in line with whatever anyone in that group might think about things, as a whole. Remember a few years ago (and up to this day) when a mom came out and claimed that vaccinations gave her son autism and helped launch this huge campaign against immunizing people because OH MY GOD WHAT IF?

My feelings on the subject.
Yeah. I had some interesting presumptions made on my behalf, because of that. Actually, I both had people claiming that the belief they insisted I held was complete bullshit and people insist that my not holding that belief despite my encumbrance was irresponsible and destroying the solidarity of the Special Needs Community because College is Fun. That's the kind of bullshit I got to put up with because people assumed I agreed with a crazy (and uncomfortably large) portion of the social group I have no choice but to belong to. Granted, because of my general avoidance of both people and conflict, the bullshit was fleeting, but bullshit it was, clear as day. 

This is, unfortunately, just one in a series of things people just kind of assume about you once they hear you've got a sibling or a child, or what-have-you without full capacities. I get told a lot how good it is that I care enough about my brother that I can help take care of him and I'm still struggling to find a polite way to correct people on that. Don't get me wrong; I care about my brother. If you, like, push him down or do some other similarly douchey thing, I'm going to stab your eyes out with a ball point pin and make a soup from them in your sockets but taking care of him doesn't really have a whole lot to do with caring for him because just like he's my brother and that means I care about him; he's my brother and he spends a lot of time annoying the piss out of me. Helping take care of my brother has less to do with sentimentality and more to do with preservation, both as a family-unit-thing and personally. If I don't make sure all the right doors are closed, he might get into the kitchen at that oh-so-forbidden gluten and keep everyone up all night or worse; my room where he will trash everything in sight. Again. If I don't have a rough-ish idea of where he probably is, then when my mother runs down the hall in a semi-panic and asks "Where's Andrew?" I won't be able to answer and send her further into a real panic. Likewise I have to help feed him, move him, change him, bathe him, and occasionally force him down because hey man; that's a lot to do, especially when you've got to get a not-particularly-interested 19-year-old to do it. 

The other thing I get a lot from people, where my brother is concerned, is sympathy. I hate that. Normally, I'm all over getting sympathy because I crave attention and that's just one more way to get it but in this case, it feels like cheating. It's never direct sympathy; that might come off as douchey. It's usually something along the lines of "I can't imagine going through what you have to go through every day. You're so brave" and...I mean...they mean well, I know they do, but it's really like anything else. Are you short? Fat? Slow? Bad at sports? Cripplingly ugly? Then there are people out there who similarly couldn't imagine themselves dealing with the day-to-day challenges of what you deal with. But you do. Because you've dealt with them every single day of your life. It's like congratulating someone who was born blind on how good they are at being blind. Being blind is whatever to them because they've always been blind. It gets to the point, even, where it almost sort of becomes backhanded; as if you're congratulating me for living my normal life which is apparently so sub-par and difficult that you couldn't imagine doing it yourself. I know that's not what you mean, most normal, sane people know that's not what you mean, but that's how some of you come off as and really, sympathy isn't what a family with a disabled person needs, usually. Even assistance is something you should probably avoid unless absolutely necessary. More than anything, give them the same respect you'd give any other person for living their lives. In my case, preferably the quiet, dignified respect which is understood without words.

Stop talking about it, is what I'm trying to get at, here.
To be absolutely serious for a moment; I obviously can't speak for the whole disabled community because of my willful avoidance of such a community, but I'm relatively sure that treating someone in that situation with the same nonchalance as you'd treat anyone else will generally ingratiate you faster than any sort of outward sympathy or encouragement. Generally speaking, after about six years, you've heard all the sympathy ever and simple acceptance is probably a welcome relief. That being said, I'm sure there are members of the disabled community who would love nothing more than to get your sympathies over and over and over again and you know what? They can have all of mine. Forever. Clearly, they need it more. 

Going back to sympathy and special treatment briefly though; a lot of people seem having trouble amalgamating and cohabitating with special needs people if that's not their normal situation. It makes them uncomfortable. Depending on who you are, it probably makes you uncomfortable. Don't deny it, no one's judging here. I get that though, I totally do. Biologically speaking, we're wired to respond positively to things like us and negatively to things unlike us and we get really really confused when something lands in the middle. Part of why people get so uncomfortable around the mentally disabled is a weird sort of offshoot of the uncanny valley effect. They're close enough to be clearly identifiable as human, yet something is definitely off about them. It's why animitrons will always, always be scary and it's why you can't help but stare in restaurants. I also get it because having a special needs brother does not accustom me to all disabilities, mental or otherwise. That's actually another part of the "Small, yet big" thing that a lot of people don't realize. I am still made uncomfortable by the kid with the funny shaped head, I am still desperately looking for ways out of the looping conversations, and to be honest, I'd still rather spend all of my time with non-disabled people (lest I just say 'normal').

That being said, I am accustomed to my brother's weirdness and also am a horrible bastard, so I'm not above capitalizing on your discomfort. For instance; one of my favorite things to do in restaurants is to catch people staring. I don't blame them for staring; my brother makes a lot of weird noises and hey man; I'd stare too. Still, I catch people staring and still, they're embarrassed when they get caught. So what do I do? I stare back. Not accusingly. Not maliciously. Not to prove any point, I just stare back until they realize I'm looking at them and sheepishly return to their meals. My crowning achievement is when I once actually made someone get up and leave out of the awkwardness. That made my year.

Okay, so it was a slow year.
As for things I've discovered concerning my brother specifically; he teaches me more practical skills than anything. In a way that's so surprising that it's actually not very surprising, helping to take care of him has made me into an expert babysitter. Years of watching my food at the table has taught me to always keep one eye out for the child, I've accidentally learned how to childproof in a way so natural to me that I don't even think I could list it out for you, I've become inured to diaper changing and various bodily fluids, I've become a master at the "Gentle but firm" way of doing things that children respond so well to, and failing that, I've become very very good at ensuring people don't move when I don't want them to. I've become so stupidly good at childcare that I actually did have a regular babysitting gig where I effectively helped raise a set of three for a little while (who still ask about me regularly, no less) and all of these things came from just living with my brother; they were a side-effect. Totally unintended. You try to compliment me on them and I'll insist that it really isn't that big a deal. The degree to which this isn't a big deal is sort of reflected in how little this affects my self-image otherwise. I curse regularly, I wear weird clothes in odd seasons, I ignore and am happily ignored by many many people, and I've got some crazy ideas that most parents wouldn't let their children near with a hazmat suit hooked up to Garrison Keillor on infinite loop but damnit, put a child in my hands and not only will everyone be in the same number of pieces as when you left them, they might actually be behaving better. It's just sort of a thing I do, coming from years and years of doing it. Like how a lot of people just habitually pick up after themselves or fix things; I just habitually take care of children. 

So is it a harder way of life? I wouldn't say so. A better way? Certainly not. You can call it a blessing until you turn blue in the face, but it's still 90% challenge. But it is such a radically different little subculture that we're morally expected to accept, regardless of its weirdness and awkwardness and just batshit insanity, and that throws a lot of people off. I hope this was at least mildly insightful and hey; maybe you learned something. Don't forget to vote and if you feel like spreading the good (occasionally dirty) word, take a moment, press our buttons, share us with your friends. 

Thank you, goodnight.

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