You know sometimes I think anyone reading this blog would have to come to the conclusion that I am the most inconsistent, changeable (hell fickle) person in the world. In one post I'm talking about my son's irreversible brain damage and then not one month later railing at anyone considering him damaged.
I'm still a work in progress there is no doubt. Part of me still sees FASD as the enemy, as something horrible that desperately needs to be eradicated. That part is ruled by fear - it not only hates to see how much my son and my brother struggle, how hard they have to work for every small gain, but it constantly extrapolates into the future what terrible things may befall them. When I step out of that fear, that gut level visceral reaction, I can see that is the very view making the world so hard for them.
And that is a horrifying thought I need to just sit with for awhile...
I, no matter how much I love them, am part of the problem.
That thought alone is enough to be rather crazy making. But I believe it. If I am busy hating something unchangeable about them then I am hurting their sense of self worth. I am rejecting at least a part of their very identity. And I am supporting a world view that says:
Your existence is wrong.
Your way of thinking, of being, of experiencing the world is wrong.
You need to be changed, corrected, fixed and prevented.
What a horrible horrible way to treat someone you love. What a horrible way to treat anyone.
So I keep fighting that view of FASD personally as well as publicly. I keep reminding myself - even as I tell others - variation is natural. There are scientists who speak very eloquently on the importance and value of biodiversity. Unfortunately I'm not one of them and so I struggle not only to communicate it but sometimes even to understand it. Even through that struggle though, I do believe it.
So please, bear with me here. I'll get better. And all of us together will reshape the world to a place that really understands and values the strength that difference can bring us.