I am sure I am cheating because I didn't actually write this, but I still feel compelled to enter it on the blog. I won't count it toward Get it Down.

But She Doesn't Look Like She Has Down Syndrome...

Let me begin by saying, most emphatically, that yes, oh yes she does.

What I hear when you tell me that Emma doesn't look like she has Down syndrome isn't anything about Emma at all, but all about you. I hear your surprise, your preconceived notions, and your judgment. I hear your missed opportunities and your unquestioning acceptance. I hear you trying to reconcile the Emma you know with the who you thought she would be. I hear your confusion that she doesn't fit into the box you expected to keep her in. I hear you attempting to comfort me in the most indirect manner; trying to tell me that she's not as different as you expected.

Ultimately what I hear is that you have no idea what Down syndrome looks like to begin with. That deep in your psyche, in a place you likely don't even know exists, you long ago accepted the all too common societal convention that defines mental retardation as ugly; something that you avert your eyes from because it frightens you. It is ugly because dependence is ugly; it frightens you because it makes you consider how fragile your own autonomy is. Inherent in this Morry is that the appropriate societal response is one of pity and self righteous authority; you pity those that are living a life you wouldn't want to live and feel unchallenged in your right to judge the lives of those less capable of independence. Your authority is an exercise in condescension.

I know you are trying to tell me that Emma is beautiful. I understand your surprise because I didn't think she would be either. I was just like you before knowing Emma changed all of that. I don't need nor want you to comfort me about Emma's place in the world...at least not like that, based on how much more different you expected her look. If you want to truly offer me comfort when I most need it, then you are going to have to be willing to dig deeper than that; to get out of the shallow end of the pool, suck it up, and dive in. If you can't swim yet, I can help teach you because I was taught too. Now, if you want to talk about the impact Emma's lowset ears will have on her life in such a surface society, that, that I will jump right into, but the simple statement "she doesn't look like she has Down syndrome", doesn't do any justice.

It doesn't do her justice. It doesn't do me justice. It doesn't do you justice..

Emma does look like she has Down syndrome - it's in her slanted eyes and flattened face, in her small build and wide smile. You just don't know what Down syndrome looks like because this is the first time you have really taken the opportunity to see.

And she is lovely, absolutely lovely, isn't she? It's not because or in spite of her extra chromosome, it just is.

A beauty to behold.

And yes, you are welcome.

Published Sep 28 2007, 08:19 AM by EmilyElizabeth

Filed under: Down Syndrome, social conventions, assumptions, judgment, beauty, societal perceptions, soapbox