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Thursday, September 01, 2011

And My Heart Cries

A couple months ago I blogged about the article coming out of Denmark about making that country a Down-syndrome free society. After reading that article I did a search looking for other articles that might have more information on this 'trend' to systematically identify, and basically, get rid of, fetuses with Down syndrome.

My search led me to a message board where this article was posted. A user posted the article and then asked the questions about where you stand on this, is it morally sound, a slippery slope, for the greater good etc. The article/topic brought up a huge discussion on this board. There are over 20 pages of responses. I've only read through 12 and not sure if I'll make it through the rest.

I expected the usual back and forth of those who would/would not have an abortion, but the depth of ignorance and blatant discrimination was way more than I expected. I know there are people out there who feel that no one with a disability should exist, but to read the thoughts and feelings that are in some of these people's minds ... yes, it made my heart cry.

Here are several examples:

It's up to the parents themselves to decide if they want to abort, though I reckon that for each less Down's person that is born, society does save resources in the aggregate.

I am sure no one wants a child with DS. I don't either. Given the choice i would ask for it to be aborted. The child itself might be happy, but it would live a lesser life than a "normal" child. (If no on wants a child with Ds then how come over 500 orphans with Ds have been adopted from Eastern Europe via Reece's Rainbow? And I have no statistics on the domestic adoption of kids w/Ds, but I know there is a waiting list to adopt kids with Ds here in the US.)
What makes me angry is people who choose to bring such misery into the world even though they could avoid it easily enough.  (Such misery? My child will never be described as 'such misery.' She is a living, breathing human being. She is well-loved.)
I don't have a problem with them being aborted if they have a serious condition like this. Although they might enjoy their lives, you have to think of others. (I have never used this acronym before, but reading this seriously made me want to say WTF - my apologies. You have to think of 'others'?! And who might the 'others' be? What about thinking about the very individuals you're talking about who shouldn't even exist?!)
You're making it sound worse than it is. Anyway, why do I have to pay money to care for these people who aren't going to do anything for me or any other taxpayers? I don't mind them if the parents pay for and take care of them, but when they are taking the taxpayer's money that could be used to directly benefit the taxpayers, that's when I start to disagree. (If this isn't an all-about-me attitude then I don't know what is. Life is not all about money, paying taxes and what others are doing for you. It should be about acceptance and compassion.)

Would anyone having a more or less normal life with its great ups and down chose in his/her right mind to live a life like a mentally challenged man, being denied the fullness of life? ... A world where you will never be good enough for almost everything, including cutting paper with scissors? (Ok, Kayla struggles with cutting paper. Yes, yes she does. She has trouble coordinating with both hands and maneuvering the paper while cutting, especially curved/rounded cuts. SO WHAT! Cutting paper has nothing to do with her quality of life and there are a lot more things she CAN do. And she'll be good enough as her abilities allow her to be and that will be good enough for me.)
I consider it to be wildly immoral to deliberately force a disabled child into existence, when you didn't have to. ... My family is currently fostering a shaken-baby whose brain will never grow and who seems likely to die within the next ten to fifteen years. Yes, we're happy to take this on, and we love having him.... but forcing such a being into existence seems wrong. 
Forcing "such a being" ... my goodness! We are talking about human beings here! Not some other type of grotesquely, repulsive form of a being. Real human beings with cells just like your own! 
The following posts are all from one user:
I have no problem keeping such disabilities out of the gene pool and taxpayer bills. Down syndrome is not a quality life for a human being and we have no right to left them suffer it. (Who the heck are you to make such a bold statement as to say Down syndrome is not a quality life. Just how did you determine this? Watch the flash mob of this group of people w/Ds dancing to Born This Way and then come tell me they are suffering in their lives.)
(someone responded to this comment that you can't keep it out of the gene pool because very people w/Ds will reproduce. And this lovely excuse for a human being posted the following reply):
The few that do, shouldn't, and the rest are incapable of living the lifestyle a healthy human being is afforded. I'm of the opinion that abortion and genetic engineering should be used as much as possible to eradicate these forms of disorders and retardation. (How can you speak for a whole segment of the population and say they aren't capable of living the lifestyle we're afforded? They are living their own lifestyle, just because it may not be YOUR version of a healthy lifestyle does not mean it isn't one just the same. What about genetic engineering to get rid of close-minded, ignorant, discriminating minds such as yourself?)
You're comparing me to Nazis? Its this kind of thinking that prevents cures for this kind of DISABILITY. It wouldn't be a disorder, retardation, disease, etc if there wasn't some sort of evidence to back it up. I'm sorry for thinking the only humans that should live are ones that at the very minimum are healthy mentally. Down Syndrome is the opposite of a healthy human being. I'm not saying to murder them, but preventing them from ever being born with abortion and genetic engineering, the later being the preferred future of baby business as it helps eradicate such issues entirely, is not wrong. I'll abort my own child if it is for certain going to be born with some mental retardation such as this and anyone who doesn't is selfishly putting that child through a lifetime of suffering. (Wow. The only humans who should live are the ones that are healthy mentally. Hmmm....what about all the prisoners? They are damn well healthy mentally, they know right from wrong, they just chose to break the law and commit crimes such a murder. Oh, but because they aren't intellectually disabled its all ok that the should be born and live this lifestyle. How many prisoners have Down syndrome? How many arrests and trials involve a person with Down syndrome? Just because you might 'healthy mentally' doesn't mean you're good to society. Just because someone isn't 'healthy mentally' doesn't mean they are bad for society.)

I'm not saying force anyone to do it, but giving people the options legally to do it is THE BEST IDEA. Anyone, coughPalincough, who brings a human into this world knowing they will be handicapped mentally to the point of being in the care of others forever is a terrible human being. (Anyone who has an opinion such as this is a terrible human being.)

You've offered no support for why we should purposefully allow mentally handicapped people to be born knowing full well their inability and incapability to fit into normal society. (They shouldn't have to try and fit into society...they should BE, just exist in society like everyone else. Society isn't all 'normal.' It's a combination of millions of people with varying degrees of intellect and ABilities. Society needs to conform to those around it. We are ALL different.) You are in effect supporting, without clause, the draining of public funding that could better be spent on curing diseases or feeding the poor just because YOU think you know what is best for a down syndrome fetus.
This SO has to to with taxpayer money. As these people end up in clinics and on government subsidies their entire lives. I know because I've worked for said clinics and seen the amount of money that pours in to support these people. A family that gets 1500$ a month to support a mentally handicapped person is wasting money that could put a poor kid through college. (These are two different pots of money. That 'poor' kid can apply for grants and scholarships via numerous resources. Thousands of potential scholarships go unused every year because people aren't looking for them or taking the time to apply for them. You can't compare apples to oranges by saying this money should be used to put a poor kid through college. What about putting the person with a disability through college?! That is a post coming for another day).

I can't even wrap my mind around this guy's thoughts and ideology (or is that idiocy?) People with Down syndrome are NOT the only individuals who use government programs/taxpayer's money for support, so why are they continuously targeted as a reason for being so? What is so wrong with people needing some support anyway? That is not a drain on society. That is living and surviving in society. What about when people age or develop Alzheimer's and need support from taxpayer's dollars? What if there were a prenatal test that can determine who will develop Alzheimer's; should those fetuses be aborted? Should they not be born and live their lives because at some point they will need some help? There is a lot of research currently being done on the connection/similarities between the brain, Alzheimer's, and Down syndrome. Because of research being done on Down syndrome there very well might be treatment for Alzheimer's one day. Imagine that. 

I hesitated to post anything at all about this, because the people who need to see it won't. And even if they did read it, as strongly as they feel about people like my daughter, their minds won't be changed. They are so narrow-minded in their focus on the rat race and getting ahead and contributing to society by how much money a person is making, that they can't see the individual for who they are.

But I have to advocate, I have to speak out. My daughter is not a lesser human being because she has an extra chromosome. She is not disposable because of the things she may or may not do. She is not disposable because she may or may not make only minimum wage. She is not disposable because she may relay on extra help to be independent. She is made up of flesh and bones and blood and veins and cells. She is not some science experiment gone wrong that you throw away and say let's start over. 

She is real. She is loved. She is valued. She is wanted. She is happy. She loves. She has joy. She has meaning. She has feelings. She is a human being. She has a quality of life. She deserves to live. She deserves to be born. She deserves respect. She deserves acceptance. She deserves dignity.

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Tracy said...

Unbelievable! It is heartbreaking to know that some people think so negatively about our kids. They will never know what they are missing, and hopefully our kids will never have to deal with such idiotic thinking.

Laura said...

I was reading an pro Down syndrome article the other day and the negative comments it received were very similar to the ones that you read. I was furious and blogged about this topic myself. I pray that these people will somehow come to know more about Down syndrome and other disabilities and that they will realize that every life is a life worth living!

Lisa Lilys mom said...

Wow! I can't even begin to say any words on this... My heart feels what your heart feels Michelle! Hugs and love!

Ellen said...

Can I add one more:

She is so lucky to have a mom like you, Michelle.

Kayla, you're awesome.

Bri said...

I can't read articles like that, it makes me so mad. Actually, not really..it's pretty laughable. The only one I need to be concerned about is God. And God made Noah just the way he is. Perfect.

Cindy said...

I'm stunned to learn that there are people out there that feel and think like that. Back in the 50's and 60's yes, I could expect that mind set. But in the 21st century? When all you hear about is acceptance and tolerance? "Accept my lifestyle; tolerate my choices..."

I'm really stunned!

Mom24 said...

Michelle, I am so sorry...I'm especially sorry for people who could write, let alone think, those thoughts. Can you imagine how they live their lives? You know the truth, you know Kayla's life is a life worth living. (((Hugs)))

AngieW said...

Awesome post. My heart is crying too!

MaggieMae said...

Amazing! I just can't even look at websites like that. Let's turn this around, what if we switch out the terms DS or MR with [this kind of] "ignorance," and rid the world of such folks before they ever exist? Wouldn't we all be happier? It is Hitleresque thinking! It takes us all to make the world go around, to keep evolving! Their ignorance drives the rest of us to advocate for acceptance and compassion for a better, more peaceful world.

I believe, without doubt, that my children with DS have made the world a better place. Have instilled compassion and understanding in so many they have touched. They are NOT living a sub-human existence. They are happy, well-adjusted human beings. And they have made me a better person!

Meanwhile, do they not realize that, as human beings, they [we] are all just a breath away from disability at any given moment. It happens all the time! There is no such thing as a disability-free world! [There never will be unless Hitler-style annihilation is on the docket.]

Beth said...

WOW! I couldn't even get through all of it! What's really funny is I forget that Kayla even has Down Syndrome!! I just see her as an adorable little girl....The Down Syndrome makes no one a lesser person and it doesn't define who they are!

Navzkk said...

It makes me so angry and so sad to know that there are people out there who think of my child like that. We learned prenatally that out little boy would be born with DS and we never considered a termination. It placed a much more uncertain future before us, one we hadn't planned for. He will be two in November and the joy and laughter he has brought to our family is immeasurable. His older brother is so protective of him and calls him his best friend. I hope that in our future none of us have to defend my sons existence to animals like those quoted above.

ChupieandJ'smama said...

I'm so sorry. My heart hurts too. We live in a society that doesn't value life and it makes me sad and angry. These are clearly people that shouldn't have ANY kids.

The comments regarding that article are VERY similar to ones you find on national/international articles about food allergies. I have learned to not read them at all. It gets me too fired up and upset. Some of these comments are from people who just like to stir the pot and some are from ignorant people that don't deserve my time.

Kayla's Grandma said...

You know for once I am speechless. I just cannot wrap my mind around those horrid comments. My granddaughter is beautiful, sweet and one of the most precious human beings I know. How dare anyone suggest that she shouldn't have been allowed to be born!! Shame on them and when it comes time for them to face their judgment I feel for them.

RK said...

Mind boggling. Scary. Frustrating. And sickening. I like to think that this is a severe minority that thinks this way. I HOPE that is the case. But wow... even a minority is disturbing in this case.

Your responses are right on.

Thanks for sharing, even if it's hard to see. I think I'll link.

Anonymous said...

All I can say is you go girl and GRRRRRR......

I don't know if it's my computer of your site but it took me like 10 minutes to get on here!

Catherine said...

It's easy to believe that we have come farther than we have when we surround ourselves with others who believe the way we do. Reading comments on such subjects is a huge reality check. Most people are unwilling to care for or pay for others who cannot care for themselves.

This is a serious issue for parents with Down syndrome children and any children who is not likely to be able to care for themselves. While you are alive, able and willing to care for your child, it will happen, but it is a matter of importance that good provisions are made for when you are gone, because unless things change a lot, most people are not going to take that extra mile or effort to care for those whoo cannot care for themselves.

Christy said...

Michelle, I'm so sorry. I hate that people like that even exist. How anyone can be filled with such hatred & selfishness is beyond me. It literally makes me sob because, inevitably, one of them will encounter my Henry and vomit this hate all over him.
Now I'm going to have to blog about this myself. Do you mind if I quote some of this?