Monday, April 20, 2009

WhattssametaForU? Part II

Ok. I’m going to admit now that I’ve forgotten what got me started on this topic. But let’s press on.
I’m going to use single quotes ‘ ’ to denote what I consider to be metaphorical doorways, keys, landmines, pick your own descriptor. These are places where you can take the subject matter off on your own tangent, or try and understand mine. . . good luck.

Let’s take on a favorite topic, Persons with Trisomy 21.
Retarded
Morons (IQ between 51-70)
Imbeciles – (IQ between 26-50)
Idiots – (IQ between 0-24)
Down Syndrome
Mongolism
Demon – Possessed
Judgment for the sin of previous generations

From the top down, all but the last two were pretty much acceptable until the mid-70’s. The mid 1970’s. I have personally experienced the sensation in the presence of certain groups that lead me to believe that the last two have not been abandoned.

“Sometimes I think that we’ve advanced, but then I look at where we are.”
-Larry Norman, “If God is my Father”

I remember reading the IQ classifications in my college textbooks, along with the use of “Mongoloid”, albeit historically, in those 70’s. As you see, they move ‘down’ from the scientific to the spiritual, or ‘up’ if you wish to view them as ‘progression’ or ‘evolutionary’ – in terms of Man’s societal and scientific knowledge have grown. A ‘timeline’ of sorts within a continuum of Human experience – gone but not entirely forgotten. Historically, they overlap, but you get the picture. We’re more ‘sensitive’, which pretty much means that we keep our counsel closer than we used to.

Then there’s the modern medical and societal metaphorical mess. Let’s jump in by posing the following question:

Should I support the March of Dimes? I mean, why wouldn’t I? 
Everybody’s against birth defects, right?

It’s about what is, what was, what could have been, what could be. . .

What I’m saying is with the metaphorical mashup is that living with and truly loving Emma means that very little means what it used to.
How does one cuddle and coo with a soul that is the one in ten*, without feeling the loss?
How does one interpret the sidelong glances and stares of what must be the other nine’s mothers and fathers who watch me struggle with Emma at McDonald’s? Moral superiority and societal shame blended into a gut-McFlurry, sometimes. Both at a loss to explain the other’s outcome, unable to fathom the realization of either path, exclusively. And so we exist, uncomfortably, together – so far.
The realization that one sees the world through a very different filter. Alienation. Probably like being very rich or very famous. Without the perks. The realization that talking about it sounds like self-martyrdom. I’m beyond that. This is what it is. Those of you who aren’t in this ‘club’ will be appalled when I say that it’s not even a rare disease that can be capitalized upon, although there are those that try. But those are discussions for other places and other times.

These realizations are not exclusive to me or even Down Syndrome; suffering abounds in many forms and features.This brings me back, ‘full-circle’, and a fine enough place to pause, as it were. We are different, yet we are the same. Nearly all of us ‘suffer’ from something. Those of us that don’t just haven’t reached it, yet.

 

*just in case I have to explain it, 90% of babies diagnosed with T21 in utero are aborted.