Wednesday, January 30, 2013

The good kind of revolution (meaning we won't bite unless you give us a reason to)

I'm part of a revolution. I really am (with admin rights to a Facebook page and all that fancy stuff - my first ever. Hrm. Cough. Yeah. Both revolution and admin rights. I know, I'm cool like that).

The Down Syndrome Uprising.

It began here at a typical son, and is becoming something even more awesome here at the DSU Facebook page.

And here and here.

(In case you're wondering, I'm pointing to my heart and then to my head.)

DSU works towards the world (YOU! Now I'm pointing at you, we're doing a lot of that in our house at the moment, you know, pointing in general, not always at you though...) embracing people with Down syndrome, towards changing outdated and wrong perceptions of Down syndrome and what it means to have it, and towards putting information out there that is much, much closer to all of our individual realities of what it means to either be a parent to someone with Down syndrome or what it's actually like to have Down syndrome.

I know my reality is not your reality, but I also think that there's a lot out there that isn't anyone's reality, or was someone's reality a lifetime and longer ago. And that needs to change.

But what does this 'embracing' really mean? I've seen a lot of it lately. To some, disappointingly, embracing and being vocal about it, like starting a blog with lots of cute photos and many words that really cannot be said enough times, seems to mean that one hasn't accepted Down syndrome (No, seriously), to others it means putting someone on a pedestal built of Facebook likes and media attention who really just did what any decent human being should do, such as happened in the case of the Houston waiter who refused to wait on a family who didn't wish to eat in the vicinity of a family whose child had Ds (for reals), and to yet others it means glossing over the condition with such language and attitude that no one is left wondering just how big of a cross to bear a person with Down syndrome is to a family not "safe", but expecting a child with T21 as is evident from this segment on the Today Show (and they have a medical 'expert' who doesn't even use people first language. Geez).

For me this (pointing at the blog, not at the above paragraph though, and then pointing at someone's toes, but that's a whole other non-post) is embracing. What I'm doing right here. Not giving up on awareness and spreading it. Sometimes with pretty pictures, sometimes not, but with plenty of token (not) advocacy. I may not be so aware of my kid's Down syndrome, but other people sure are. Yesterday at the hospital, while sitting outside the lab holding Babe and minding our own rather spit-y patty-cake, we were made from across the waiting room. This time around the person who'd spotted Babe wanted to be near us and talk to us because she too had a kid who has Down syndrome and she needed some positive vibes for the open heart surgery her daughter is having as we speak (so yeah, let's send some. Right now), but there have been other times where someone has spotted Babe and instead of embracing her as a regular toddler, has either made allowances (She knows how to wave hello and good bye and she should do it at the end of Story Time when all the kids do it), or assumed that she has glasses because she has Down syndrome (yes, that makes you nearly blind now too), to give a few examples. I know that sometimes allowances need to be made, accommodations will happen, but they should come after the fact, not pre-emptively due to low or no expectations, and I realize that Babe's poor eyesight can be linked to her having Down syndrome, but the route the observer takes should be more complex, and perhaps allow for her having bad eyesight just because, like in the case of that other kid, who wears the same glasses that Babe does, +6 prescription and all, but doesn't have Down syndrome, and just has bad eyesight, just because.

So I guess I'd like my genes and parenting skills to be at least equally blamed for Babe's shortcomings as Down syndrome is, perhaps even more. You know, embracingly.

Because I am guilty.

So if you're out to do some embracing, join us, like our Facebook page, spread the word, and feel free to blame me, in all senses of the word. There can never be enough advocacy. Thanks.

Cute photo. Deal with it. There's plenty more coming.

Friday, January 18, 2013

I already win

How does this work again?

I write stuff on here and someone comes and reads it, thoughts are provoked, minds changed, awareness enhanced? On a good day. Something like that?


Instead, some Brazilian steals photos of my kid for some creepier than creepy purpose, some meme site links to me while I'm in the hospital with my kid and way too busy and worn out and concerned and exhausted to find out what exactly is going on.


So why in the hell and its army of hockey sticks do I worry about good intentions that come off in the wrong way or ignorance or people first language when there are absolute sickos out there who either will do something so creepy I don't even want to think about to a picture of my kid or get some strange satisfaction from figuratively kicking a person with a disability who they only know from a picture and only see as someone weaker than them?

Why would I fight minor misconceptions and positive stereotypes when there is a huge population out there, loose in the neighborhoods of the world, whose existence is so base that they aren't just purposeless and insignificant, but they actually add evil and negativity into the atmosphere?

Because they don't matter. Really, they just don't.

The people who matter are the ones with enough humanity left in them for them to be able to see themselves, even for just a blink of an eye, in someone else's shoes, in someone else's life. People, who with the right kind of education and awareness, can make the world a better, a more positive place for everyone. Not actively contribute to its downward spiral into the abyss of mean.

So go away you creepy Brazilian and get some psychiatric help. You need it. And the person making my kid into a mean meme, get a life, read a book, love someone, you can make your life into something that matters, some day. To someone. Even if that someone is the (currently probably a very disappointed) person who gave birth to you.

I have more significant battles to fight. I have a happy life to live and in that I have you already beat. And you know what? I pity you. Your life must really suck.


I win.