Posted tagged ‘disability’

The Numbers Are Staggering

April 16, 2011

I’m not a big fan of numbers. Never have been.

As a liberal arts major, math has always confused and confounded me. Professionally, I am in the field of marketing and public relations, where my view of numbers was forever shaped by an early mentor growling over a single malt in a smokey, midwestern press club, “Numbers never lie, my friend, but our job is to torture them until they tell us what we want to hear.”

This morning I read an Autism Awareness article BC (before coffee) by Todd Drezner that has stuck in my brain, shot through my body and refuses to give up its grip on both of my BC functioning brain cells. And it’s not the message, so much as the numbers, that are twisting me in knots.

The message is cool. Autism is hip. It’s hot. It’s now. I agree. My daughter is the coolest kid on the block. Not because she has autism, but because of who she is. I like hanging out with her.

I also think Down syndrome is hip and hot. My son is, as ESPN’s Stewart Scott would say, “Cooler than the other side of the pillow.” Not the extra chromosome, but my son. He is Carey Grant/Brad Pitt cool. His slightly mussed, surfer style hair, the way he saunters into a room. The way he communicates despite being largely non-verbal. (I, too, am largely non-verbal, but it only gets me in hot water with my wife.) He’s got a great sense of humor.

I totally agree with Drezner’s message. It’s the numbers that are killing me. I’ve heard them repeatedly over the years. Maybe today is the day I hit critical mass. As Drezner points out in his article, 9 of 10 women told they are carrying a child with Trisomy 21 (Down syndrome) elect to abort the pregnancy. Ninety percent.

But I believe the women are making decisions to abort based on bad, outdated information. Doctors are frequently brutal in their initial diagnosis for our kids. (They say they are just being graphicly real – not wanting to paint artificially rosy pictures. Yeah, thanks.)

Think about raising a child. Any child. There are no guarantees, never have been, no matter the genetic makeup. Yes, raising a child with Trisomy 21 is different, but completely do-able. As is raising a child on the autism spectrum. Yes, our son has come through several health-related issues. But he’s come through them, and taught me more about life while doing so than any other teacher I’ve ever had. To counsel a woman to abort due to a genetic anomoly is wrong on so many levels. In fact, the in-utero test could be used to give parents a “heads up”, a chance to research and plan, to get to know other parents who are already on the journey, in order to get ready for the ride.

I was born typical. So my mom didn’t get the warning that I would spend more years than not being selfish, self-absorbed, hurtful and bone-headed. My mother is a saint, but many (quite possibly 9 out of 10) would probably not choose to have gone through my darkest, self-created moments with me. Was I easier to parent than my son, or the nine other kids conceived at the same time as he that didn’t make it full term because of parental choice? The easy and honest answer is no.

I’m all for awareness. And it is with doctors and health care professionals that I want this newly expanding “awareness” to begin. Let’s address the attitudes of those in the health care industry, as well as the entitlement we as a people feel regarding our children (and babies). We, as a society, have come to a place where we believe we are entitled to “perfect” children. News flash…we’re not!

Drezner posits that autism is so generally accepted because it cannot be diagnosed before birth. Don’t get me wrong. I’m thrilled that awareness of autism is as general as it is. I believe my daughter is more generally understood now that she has a definitive label. But my deepest desire is that the national conversation be directed toward awareness and acceptance of all disabilities, regardless of age and specific label. It’s a conversation we can’t afford to ignore.

The numbers are overwhelming.