It's depressing enough to know that over 90% of prenatally diagnosed babies with Ds are terminated. I wasn't aware of that number before I had Finn, and since I've become aware of it, I still have a hard time wrapping my head around it. To know, however, that there are people in the world who liken persons with Ds to animals, who seem to truly believe that people with Ds should not be taking up space on the earth, and who go out of their way to spread a whole lot of hatred and misinformation . . . well, it all just leaves me feeling fired up and rather defeated at the same time. Is this the world my son is going to grow up in?
There is this notion that people with Down syndrome suffer. I don't believe that they suffer any more or less than us "regular folks," except in this regard: prejudice, ridicule, hatred. And what the hell is up with these people? What has led them to become so filled with intolerance and devoid of compassion? Are they afraid of something? Because you would think that a person who is comfortable and secure with themselves would live and let live. Have these people been traumatized by some past attack by a mob of people with Down syndrome? Not likely. I'm only guessing, but I would lay money on betting that just about every person who has such strong feelings against people with Down syndrome have never actually had first-hand interaction with a person with Ds. I would bet that their opinions are based on things they've seen from a distance and outdated things they've read - in other words, ignorance.
Since when did only "perfect" babies become acceptable? Why do we live in an age of disposable babies? Anyone who has read my blog for any length of time knows that I am atheist, and therefore these are not religious or even moral judgments on my part. I am simply a human being who believes that all human life has value.
Every person who becomes pregnant is taking a chance on what kind of baby they will give birth to. And even "perfect" babies are not without risk. There is no guarantee that a baby born healthy and "normal" will not some day contract some terrible illness that will leave them handicapped in some way. There is no guarantee that that perfect baby won't one day be involved in a car accident that will leave him or her brain injured. There is no guarantee that that rosy-cheeked, healthy baby won't someday become addicted to drugs and lead a life of crime and end up in jail, draining taxpayer money.
No baby comes with a guarantee. So why is it that babies born with their problems up front are so deeply rejected by some people?
I have to believe that people who hold these horrible opinions, people who spread the sort of garbage that's in that blog post, are aberrations. I have to believe that the majority of people are good, that they believe that my son's life is worth living, that he is a valuable human being who deserves kindness, compassion, and respect. To believe otherwise would be unbearable.
18 comments:
I absolutely HATE when people say, "suffers from Down syndrome"
I loved, loved, LOVED your response. I have been trying to get my comment up on the site but have been having difficulties. But, quite honestly, I think you did the Oz Squad proud!
GREAT post! I so agree with you on all of your points.
I had the geneticist tell me that I should have had the Amnio done so that I would have known. As if I would have changed my mind?? That is what they were implying which disgusted me. I am in LOVE with my son and if he didn't have Ds he wouldn't be Max! I don't get the strange judgements against people with Ds and it's so sad to me. I think in the end it all comes down to fear. Fear - not knowing how to respond to someone that is different than they are. And yes - there isn't any such thing as "normal" I was born normal - then went to treatment at 18 to deal with a drug problem. Luckily I've been sober almost 21 years now but I'm certain that's not what my parents had in mind with they gave birth to a 'normal" baby.
I so agree with all you've said. There are no guarantees with any babies.
In reading down through all the comments on his post, I did at least realize that he doesn't hate people with Down syndrome or blame them for their disability or existence as living beings in the world. His real problem is with the parents who choose to bring them into it.
Well, that's okay. If he's got to hate someone, let it be me. I can take it.
Just leave my awesome, beautiful, precious and cherished kid out of it.
Lisa,
I had started to read that blog post yesterday, but couldnt get through it. It really makes me wonder whether or not Im cut out for this "Oz Sguad". I know that i want and need to be strong for Dylan and all of his "peeps", but sheesh...that was not easy to read, for sure.
But yeah...Im right there with you. Good post, my friend.
((Hugs))
woops...that would be "Oz Squad". that's what you get for attempting to type while two children mess about on your lap...
This is a great response to some hurtful stuff. Thanks for telling it like it is. -xxoo-
I HATE the phrase "suffers from Down syndrome". I heard it just this morning on the Today Show. They were talking about the husband and wife in Florida who had adopted kids with Ds. The couple were murdered a few days ago. I've been irritated since hearing that phrase this morning. It sad...because my daughter is NOT suffering because she was born with Ds. She is so laid back and easy going. Too bad we can't all be like that!
It is a sad fact of life that there are hateful people out there. Prejudice of any type is a horrible thing. Thanks for sharing your thoughts on this and for educating, advocating and provoking thought through your blog.
I think what got me most was when people like me who knew their baby had DS are knowingly bringing this "suffering" on their child. I hadn't thought of it that way but I don't think Bennett suffers right now and I'll do everything thing I can to make sure he doesn's suffer. What would this guy do if he had a child that slipped through all the prenatal testing and was born with DS?? That's what needs to happen so this guy can have a change of heart. And unfortunately it looks like his baby would need to slip through the tests because otherwise it wouldn't even be born. He's really a pitiful human being for the things he's written.
I can't believe people really believe crap like this Hitler-esque idea of creating perfect babies. A pox on them. Hardly anyone I know would pass the "normal" test anyway - myself included.
[And even "perfect" babies are not without risk. There is no guarantee that a baby born healthy and "normal" will not some day contract some terrible illness that will leave them handicapped in some way. There is no guarantee that that perfect baby won't one day be involved in a car accident that will leave him or her brain injured. There is no guarantee that that rosy-cheeked, healthy baby won't someday become addicted to drugs and lead a life of crime and end up in jail, draining taxpayer money.
No baby comes with a guarantee.]
** Agree with this totally! I worry about the future for my 'typical' children as much as I do Anna's -- the concerns are just different.
Lisa, I have been reading your blog for a while, I really appreciate you sharing so openly and honestly. I read most of the entry with tears streaming down my face. I cannot believe how cold this person is. To say that brining a child into the world with Down's Syndrome is a representation of a sacrifice for religion is awful. It is just a mother loving their baby like any mother loves any baby. I am so sorry people are so hurtful. It really is shocking and disgusting. I hope that the Oz Squad can make a positive impact on people with such ignorant opinions.
You know, it is one thing to be ignorant, but even more horrible to add mean to ignorant. I am disgusted by this persons lack of personal reflection and compassion. I know it hurts, Lisa. Hugs.
People just suck! That post brought back memories of myself actually...not black enough, not korean enough. Somehow, people thought I suffered and wasn't happy with myself because of my mixed heritage! The worse was in college, some people are just so ignorant! I'm so happy that my parents taught me better than that.
I guess I have to wonder what it is that Lillian is suffering from? She's not in pain, she's generally pretty easy going, and she's loved loved loved! The only thing that will ever make her suffer is the lack of acceptance from people who refuse to acknowledge the person she is and dwell on the fact that she has Down syndrome. OH...and let's add to her suffering because not only does she have Down syndrome, but she too is a product of a mixed marriage! (And yes, some people think that she has Down syndrome because we are mixed!)
I really am at a loss for words. I am so angry I can barely type. Though I am not the parent of a child with Ds I am the parent of a child with Cystic Fibrosis. Apparently, my beautiful, amazing, incredibly strong little girl, is "afflicted with a terrible genetic illness" and should have never been born. I'm beyond pissed.
Lisa, I loved your response. Very well said.
This horrible man is from the Ukraine and unfortunatly this is what alot of people are taught there.That is why there are so many precious children from the Ukraine who need to be adopted.
You're absolutely right about there being no guarantees with ~any~ babies. Life is full of awful things that can snatch someone's "normalcy" in a second. *is in total agreement - you said it really well*
"suffers from Down syndrome" is not a great way of describing the life of someone with an extra 21. My daughter was born in 1971, and her DS was a surprise. She suffered in her life, from prejudice, from not having her heart defect repaired, from depression, from pneumonia. . . but not from having DS.
I had to go read that post to see what the hoorah was about. It turned my stomach. Some of the comments were worse. I didn't read them all, decided there was no need to expose myself to that yuck.
My daughter educated everyone she met about DS, just by being herself. She would explain in more detail if they asked. After she started oxygen, she would talk about pulmonary hypertension, and educate folks about that, too. There's a definition of Eisenmenger's Syndrome on her web page that specialists have praised.
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