Monday, September 03, 2007

The Eugenics Question

I recently commented on Autism Web using a link to an old eugenics display from the 20's and comparing it to the current Autism Clock. Since we are isloated for the 'normal' population, I often forget the prevailing attitudes of those not affected by children on the autistic spectrum or children with special needs for that matter.

I had never given the fact that our society screens for genetic 'defects' like Down Syndrome much contemplation in the old days. On some level, I have no problem with giving the choice of whether you are up to the challenge of raising a child, and raising a special needs child is just that much more difficult. But, isn't society giving a prejudgment of what is a worthy life vs what isn't? If we come up with a way to screen for autism, will the same selective process occur?

It's scary to think of the 'old me' coming to a decision on whether Liv was worthy to exist. Hindsight 20/20 of course, never...but FORSIGHT? I have no way of seeing what SHE will become, how could I decide or realize the strength in me to see what I would become? I had no idea that I could handle this life before it happenned.

Then there's Grace to consider. It's one thing to think of Liv, profoundly affected, non verbal, struggling to acheive an independent life. It's quite another to see Grace, autism spectrum, yes, but more than likely, she will lead an independent life...maybe even a 'normal' life, whatever that is. What would these screenings show of her future? There are severities of Down's that are as close to 'normal' as maybe 20-40% of the population (source: fantasy information network, just a guess). Why would we arbitrarily put a stigma on a group of children even more likely to be intelligent and not in need of anything more than an alternative form of learning? Get in line, those 'useless' artist talents, creative writing skills, musical aptitudes, acting and all those other things that, more than likely, will produce less than fiscally productive members of society could be next.

I ruminate over the 'fact' that we, as a family unit, are a drain to the resources of 'normal' society. But why is donning a helmet and travelling by bus to attack others with helmets for possession of a ball on a 120 yard field in an organized fashion considered normal? Why should I feel bad that my child's disability may force dozens of families in my community to pay for this activity? Or that a half dozen or a dozen kids may not reach their full potential in order that my children can reach theirs.

I guess my as yet unproven answer to that is that the cost of those 6 kids is nothing compared to the 60 people who would not have government services because my children would need lifelong services had they not had these early therapies. I say unproven because we do not know if therapies are really needed, since this early diagnosis of autism is a new phenomenon. We also don't know if they will really work long term and we don't know what therapies are most cost effective. So, I fear from society's point of view, someone's going to stand up and say "why are you wasting all our money on a theory?" or, worse yet "why are you wasting our money on something that did not work?"

I guess the most fearful of the questions society could ask is "why are we allowing these people to exist in the first place?". I won't get all sappy and cutsy on you; if society needs reminding of their duty to all of its members, then you can find me and mine in a cave somewhere...

No comments: