Excerpt:
We are so convinced that we have a right to know and understand every single scenario that we see. We are offended by nuance, and confused by invisible impairment. We are the gatekeepers of entitlement (a word that is itself loaded with judgment), and if there's one thing we cannot stand, it's the idea that someone with a disadvantage somewhere is getting something that we don't think they deserve.
2 comments:
We've spent so much time and energy focusing on how to stop people who would abuse any given system here in this country that we've lost sight of their original intent.
I will never understand why so many people are so self righteous that they choose to burden themselves with being judge, jury, and executioner on every person they come in contact with who gives them pause.
I've been following Schuyler's story since the days of the original BBOW, though I am by nature more of a lurker. I think I've always felt a bit of voyeuristic guilt reading something that did not apply to me. I shouldn't, I know. Just as some funny ladies with fertility issues inadvertently helped when I had my own problems, I know your mission is to educate, not preach to the choir. I've always appreciated the insight and humor you bring to my screen, regardless of the subject.
And just as those ladies prepared me for a journey I never thought I'd take, your story has taken on a new significance in my world. My little boy will be 4 in a month. He entered the world 3 months early and we know some things are just totally unknown in regard to his future, what roadblocks he may hit. He is physically healthy, very bright, and is both very mellow and very, very busy. He has an excellent vocabulary; what he does not have is the ability to put together a spontaneous sentence. Everything he says is a phrase he's heard before. He can insert a word here or there, for example the X in "I want X please" but he cannot tell us what's wrong when he's sick or sad, or what he did today. He understands concrete, tangible things but we don't know how much of abstract concepts he really gets; thus, we can't potty-train him. He can't tell us he needs to go and I don't know if he understands when we tell him how to know that.
Like Schuyler, Alex's problem is largely invisible for now. We don't even know what it is, and he's been in EI since before his due date. He's too young to diagnose what we think it might be, and we're just guessing. It's okay now, he's still pretty small (preemie) but I worry over the future: that he'll be using rote phrases forever, that he will be particularly vulnerable to predators because he doesn't have the words for terrible things, and that people will be mean to him. I worry that I will make him feel like less somehow, with my love of words and language. This post in particular, about the clueless judgment of others, hit me where I live lately.
tl;dr: thanks to you and Schuyler for fearlessly putting your story out there. It might be knowledge I never wanted to need, but it's power nonetheless.
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