Let's face it, as we are the new batch of those people responsible for the production of the whole next generation, we are a bunch of sheep.I mean that collectively.
We are the group that is controlled, handled, manipulated and led into creating the dreamy idea of the what a "perfect" society is.
We are just the puppets, the real designers of the next generation are the scientists and clinicians, who so warmly and cheerfully lead us to believe that they can practically hand us the perfect life, when in reality the most genetically clean wave of society is their goal. I've had to listen to the cheerful delivery of this goal myself, in a small examination room, while Will sat on my lap. I fired off the most terse of letters to the chairman of the hospital, but of course, never heard back from them.
Organizations such as the International Society for Prenatal Diagnosis and The Medical Screening Society, whose members meet at various spots around the world to discuss the myriad of methods to cleanse society of it's genetic anomalies, ensure that medical personnel the world over are apprised of the latest strategies to lull parents into thinking that the elimination of the child they are carrying is the only thing that can possibly make their lives livable. There is a distinct reason why fair information is not proffered about having a non-typical child. It goes against that party line, against the common goal of pureness.
It's such a shame that so many government dollars are directed to these types of organizations (to be honest, I cannot discern if the above mentioned societies are the recipients of government grants, but I think that it would not be surprising) yet dollars to improve the availability of information about raising a child with a chromosomal difference, or money applied directly to the benefit of people with special needs is just a trickle.
Let's look at the example of autism dollars vs. DS dollars. In almost every instance, children with DS ride the silk lined coat tails of the generous dollars given to create educational environments for kids with autism. In the minds of those controlling the purse strings, DS has been "taken care of" and the small number of kids with DS are shoe-horned into splashy rooms and programs for the group of kids that, as of yet, can't be targeted prenatally. Don't worry though, I'm positive that guys and gals at the ISPD and the MSS are working feverishly to fix that. You can think that I'm being a little harsh here, but you can't deny I'm speaking truthfully.
The writing is on the wall as to why this discrepancy exists. It does not take a genius to understand the impetus of prenatal research grants.
The only way to upset this convention is to refuse to be a sheep and know that personal knowledge and understanding is both empowering and strengthening.
In the mean time, we continue to work away at collecting nickels and dimes from good hearted folks to improve the quality of life for people with differences and to raise awareness. It's painful to look at our meager piggy bank when big fat payrolls exist to keep us as the nickel and dimers, the easily-led-sheep.
Don't be a sheep.
4 comments:
Hey Kelly,
Thanks for posting this... I'm still a sheep, looking for a way to become more of a wolf, I suppose. I get angry, then frustrated, then depressed about the way DS is mostly viewed and treated. (I just dropped a note on a blog today, as a matter of fact, of a woman who couldn't fathom allowing children with DS to be born and live a life as a "vegetable.")
Anyway, I've had you on my Google Reader feed and have been meaning to drop a note from time to time. Wishing Silvi were as comfortable in the water as Will is. :)
Agree wholeheartedly, but at a bit of a remove from you. From the (very lightweight)research that I've done, Ireland seems to be a little bit of an anomaly in that seeing kids with DS is a fairly regular occurrence. Screening doesn't not happen here as a rule (except for older mums to be, and then by request) mainly because terminations here are completely illegal. It has spared us a great deal of pain, but I'm not naive enough to think that we're somehow above it all. It's just not on the menu, and having Downs kids so visible helps if not quite to normalise things then certainly not make it such a major deal.
What I want to know is what can effectively be done to counter the de facto policy that most 'first world' govts and medical professions pursue: the whole termination-is-best policy. It must be shockingly hard for any parents, but especially prospective first timers, to face into that lobby and keep their wits - and their prospective offspring - about them. It seems easy to talk to each other about it, esp when we know the wonderful side of living with DS, but depressingly difficult to get beyond to those who need the message most.
Found on Pat Bauer's pages: http://www.patriciaebauer.com/2007/08/30/stand-tall-the-conversation-continues/
Very best of good wishes
Nick
http://downsdad.wordpress.com
Thank you Nick, your experiences are very enlightening.
Let me see if I understand what you are saying. Families in Ireland more often include a child with DS compared to families in Europe and North America and...Ireland didn't go to ruin? There are not hundreds or thousands of families that have been decimated? There are not hundreds or thousands of drooling, dependent children and adults left to drag down parents and siblings?
WHAT?
Are you saying that all the "information" here is false? Wrong? Way,way off base and used almost as fear mongering?
I think the news-delivery here relies on keeping DS as an unknown, because nothing is scarier than the unknown and with a little bit of way-outdated and incorrect info, someone in the medical community can control the situation quite nicely, and pedictably, 90% of the time.
In your society, it is probably the case that those who do not directly know someone with DS, at least have a casual aquaintence with someone who has DS. With that bit of life experience, the fear and unknown are not there.
I don't really know the answer to your question Nick. I don't know what it takes for a supposed highly educated person in the medical community to embrace this type of eugenic thinking. Maybe some of it is pure naivete and inexperience, but some of it has to be an embrace of the "pure" or "right". It is so ironic how men and women of learning strive to keep so many in the dark.
The medical community here qualifies itself by saying they want to prepare parents for their child's needs. I'd believe that if, immediately following the results, there wasn't the offer of termination. Of course doctors proclaim they are legally obligated to offer the termination, but more often than not, it is multiple offers with frantic, clock-ticking pressure applied to the parent. That leaves parents with nary a moment to collect their thoughts, let alone arrange to meet with people and understand educational opportunities and early intervention therapies.
I feel sorry for parents who must undoubtedly have regrets after such a crisis.
Thank you for the links you provided.
Hi Kelly,
I must admit, that until the birth of my beautiful boy Landon 9 months ago, I was a sheep as well. However, when offered the 13 week screening to look for markers, my husband and I refused. The crazy thing is that I don't know why. Any other time I would have jumped on the chance to have another peek at my baby. We were told he had markers of Down syndrome at the 20 week ultrasound - fluid on his kidneys, small arms and legs. We were told we could have an amnio to confirm but here were the options: have amnio, risk miscarraige, confirm the dx and decide if we want to terminate, or, since his little life was precious to us, take the route of not causing him any risk. I really felt that my doctors were not trying to pursuade to terminate. After he was born and it was confirmed he had Ds, I began researching and one of the most shocking things I learned was the statistic of parents that terminate. It made me angry and just plain sick. I have a beautiful baby - sweet and loving, why wouldn't anyone want that. However, I have to admit that if Landon did not have Ds, then I would have never thought twice about it. And I feel bad for that. I'm hoping that the local Ds association wants to get on board with educating medical professionals. Right now, we are being a family mentor to a masters level early infant education student. I want to find out how we can be a family mentor to an ob-gyn medical student and hopefully make a difference to many families who will be delivered the news that they are having a child with Ds. I'm trying not to be a sheep anymore. (Sorry for the novel!)
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