I was going to jump into a

August 24, 2006 at 7:39 PM (genetic testing) ()

troubling and fascinating debate here.

but it’s late and I’m tuckered.

So, I’ll just say this.

I’ve known many disabled persons who were so incredibly clued in that their life was happiest and best just as they were.

It’s these folk that I feel are profoundly threatened by the ability of widespread genetic testing for many genetic conditons.

Are we going to accept and work hard to integrate the “diversity” of those that are here now, and yet work like heck to ‘test’ many conditions seen as “disabilities” out of the next generation? Striving mightily for ‘perfection’ has been a large part of my family emotional landscape and it *did* in my case, often feel like disrespect of my difference.

If I had aquired only the single disabling condition known diffferently as ataxia, ataxic cerebral palsy, cerebral palsy or spastic paraplegia and *that had been it* I’d find myself completely in accord with the “i’m perfectly fine just as i am thanks.” It’s important also to note that cerebral palsy is *not* genetic or inherited[snark at the ex boyfriend who was dying to put the “I’m a victim of genetics” label on himself. NO, IT IS NOT A GENETIC CONDITION I’ve been waiting eight years to win that argument 🙂 ]…Just one of them things that happens.

But then, the rest of the crew piled on, and with familial tendency towards depression and addiction and cancer…

I do find that I wish that genetic “counseling” (note I did not say ‘testing’ ) had been in common use before my parents got together. *before* there was any meeting of genetic material of any sort.

Some honest doc who just wanted to sit down with the both of them and say…”now, based on your medical histories I see these as possibles that any offspring you might think of creating might have to struggle with. (depression, addiction,and cancer.)

If I had a time machine and I could go back to say, 14 months before I was born and say….

“Look, I’m your kid. I’ve had a really interesting life up to this point as a matter of fact I was born with a disability and that particular one shaped my experience but in the long haul it wasn’t the negative it was cracked up to be. But there have been a few more… I can tell already that the next forty years or so won’t be fun for you or me.

So can we just *take a pass?* Just don’t do it. No one would have to fight about choice, the right to decide whether or not to conceive, when does life begin, and what sorts of lives have value and are there any that have less?

Just go pair up with two other different people and make kids with them. Do *not* put this particular genetic mix into the mixing bowl…

I would say that if I could.

I’m just as valuable as the next person, yes. But sometimes, way too ***ked up for my own good.


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