Those who know me are aware that my family has been blessed with Rebekah, the third of four children. Rebekah’s a smart, sneaky, hilarious young woman who is nearly 22 years old. Rebekah also has Down syndrome. It’s all caused by an extra 21st chromosome. Rebekah has more of something than most of the population, and it causes her to be slower both mentally and physically, but honestly, most of the time I forget. To us, she’s just Rebekah. And you’d better watch out, because she’s fully aware of people’s perceptions about her, and she’s more than willing to use it against you in one of her many sneaky attempts to get something out of you. She’s quite skilled in the appropriation of a Krispy Kreme and Diet Coke from a kind lady on any given Sunday morning at church, despite everyone’s awareness of her diabetes.
Growing up with a sister with Down syndrome seems quite normal to me. I can’t imagine anything else, and my parents have been absolutely wonderful in their raising of her. Unlike some other families we know, my parents disciplined Rebekah when she did something wrong. They didn’t let her get away with very much; at least, not any more than the rest of us got away with. Rebekah’s grown into a quite intelligent young woman who, despite her faults, does know the difference between right and wrong. Our family just doesn’t accept the idea that we’re unchangeable products of our environment. And Rebekah’s “affliction,” as I’ve seen Down syndrome referred to as of late, wasn’t a death sentence. She doesn’t have a horrible life. In fact, she seems to quite enjoy herself. For her, Prom came and went with zero drama. And if every girl there had been wearing her dress, too? She’d probably have been ecstatic: “Look at all my prom dress buddies!”
Get to know her, and you’ll notice something right away. Rebekah’s got too much love for others to not share it. The beginning of the Sunday morning church service doesn’t seem to be enough to get Rebekah to stop giving hugs and greeting everybody. Her friends have the diversity progressives can only dream about. She really couldn’t care any less about the color of your skin. Her best friend Keila is black. And she doesn’t seem to notice. She just knows that Keila is a lot of fun, and she wants to go bowling with her and the rest of her friends every Saturday at 2:00. (I normally get a text from Rebekah every Saturday around 3:30 to let me know her score. She can, and routinely does, trounce me. Without bumpers. Also, I now refuse to play Scrabble with her. There’s another example of using perceptions of her against you. Her vocabulary is surprisingly sharp.)
She’s clearly had an impact on the people in our community. Our parents arranged for us to each receive a book of congratulatory and encouraging notes from friends and family upon graduation from high school. Rebekah’s was at least three times the size of the rest of our books.
I write this because since the Palin nomination, there have been a slew of self-aggrandizing pundits that are sudden experts on a life with Down syndrome. And while the best of them are trying to be gentle with it, their choice of words shows how they feel about it. To them, hearing that you’re going to have a child with Down syndrome is terrible news. It means your life, and the child’s life, will be fraught with endless doctors visits and complications. It means you’re going to have a “retard” that won’t ever live up to your expectation. Your child will never be the sports star. He or she will never be very smart. It’s going to be so very hard, so why don’t you just abort the baby, right? It’s compassionate, really, because that kid’s life would just be so awful. Not even a life, not one worth living anyway.
It actually turned my stomach to write that, even with tongue firmly planted in cheek. This is the aggregate argument I’ve heard from the progressive left over the last two days. And it makes me so very sick. How dare you claim the right to decide someone else’s life for them? I thought being a progressive was all about creating maximum opportunity for individuals! Killing a living person certainly crushes that dream. Do you think I’m lying? Testing for Down syndrome has gotten more accurate and better at the earlier stages of pregnancy, and a recent study estimates that 91-93% of prenatal Down syndrome diagnoses end in abortion, with various other prenatally diagnosed diseases resulting in abortions to a lesser extent. (This, combined with the startlingly low rate of rape/incest/health-of-the-mother abortions, which sits somewhere at a measly 2-3%, should really be the death of the Pro-Choice movement for most reasonable people. If it’s not for you, grab a look at this chart, and I shall enjoy hearing your argument that abortion somehow isn’t post-coital birth control.)
In a piece written in the Washington Post several years ago about her experiences with a Down syndrome child, Patricia Bauer wrote:
In ancient Greece, babies with disabilities were left out in the elements to die. We in America rely on prenatal genetic testing to make our selections in private, but the effect on society is the same.
Maybe it’s the disgustingly high level of self regard we have as a society that enables justifying the abortion of any baby who might prove to be less than perfect. Our lives are so great, we think, that anything less would be “suffering.” And that is, in fact, the term that is used. And it is used by people who speak with authority in an attempt at compassion, but these fools clearly do not have love for any of these Down syndrome kids. How do I know? Because they observe from a distance. They do not speak with the experience that says, “I have intimately met some of them, and now I realize that they are people, too.” They speak with a ignorant arrogance.
Doctors used to call them “mongoloid idiots” and recommend locking them up in a mental institution. Now we’re so progressive, once prenatal tests reveal the “affliction,” we just kill them. You know, to save them from that horrible life they’ll surely have. Or is it to save ourselves from having to pour our lives into someone else? Tell me, how many kids with Down syndrome have you met that are suffering? I haven’t met any. And I’d wager that if you could actually come up with one example, their suffering would be the result of external factors rather than through mental or physical health complications.
Of course having Rebekah in the family has required extra effort! But her presence in my life has only added to my joy. My mother didn’t know Rebekah had Down syndrome until she looked at my sister’s eyes. But I am so very glad my mother didn’t listen to the “professionals.” A life where my experience with my sister consists of routine visits to some institution is wholly unimaginable to me.
So put your money where your mouth is; being enlightened means actually being even better informed. At least find a friend that has someone with Down syndrome in their family and talk to them at length before letting that overwhelming sense of always-rightness roll you right into making ignorant comments about a real person’s life.
UPDATE: It’s good to see that some pro-choice people are speaking out against the vitriol coming from the eugenics crowd:
Half the comments on Palin and her son Trig from etherpeoples seem to imply she is some kind of religious nutbar simply because she chose not to terminate her pregnancy. Or that she undertook her own misery in order to adhere to a misogynist value system.
Are we seriously not going to entertain the notion that she just plain wanted to complete her pregnancy and raise a child with Down syndrome? Seems perfectly rational to me.
UPDATE II: From a forum post I found here, another personal story about a fella with Down syndrome:
When I was thinking of Trig, I was reminded of an encounter I had a couple of weeks ago on the Delta Shuttle from Washington to New York. It was a mostly empty plane, but I went all the back to the very emptiest part of the plane to spread out and enjoy he quiet. And there was a man sitting in the very back row who immediately piped up, “Hi. I’m Ian. Would you like to sit next to me?”
He was a guy with Down syndrome, maybe in his twenties. I declined the offer, but we struck up a conversation. He was going to New York for a family celebration, including for his birthday. I told him I had a birthday coming up too and he lit up and came over to vigorously shake my hand in congratulations — more delighted by my birthday than his own.
When the plane began to fill up a woman and her daughter came all the way to the back with a huge bag. I began to wonder to myself if I should offer to help them with it, when Ian popped up, told them he’d get it, and lifted it up and shoved it in the overhead compartment. When two men came down the aisle with a box they weren’t sure would fit overhead, he intervened and told them it would — “trust me” — and put it up for them.
He chatted amiably with his neighbors during the flight, and when we landed was up out of his seat first thing to help that woman get her bag down.
From this brief encounter, I dare say Ian is friendlier, better adjusted and more considerate than about half of the people on the streets of Manhattan or San Francisco on any given day. Yet most of those people are perfectly unperturbed by the elimination of babies with Down syndrome in the womb. To hell with them. God bless Sarah Palin for bringing Trig into the world, and may he shower those around him with as much sunshine as the gentleman I met on that flight.
Whereas previously, a Down’s child could be born without the prior knowledge of the mother, going forward, a parent with a Down’s child will likely (at least in the developed world) have made a conscious choice to have that child. As prenatal testing for trisomy 21 becomes ubiquitous, Down’s children (and eventually those with other genetic disorders) will increasingly become symbols of faith – a freak show meant to communicate the “family values” of their parents. The children will become public sacrifices made by their parents for their faith. They will be a symbol of religious reverence in the same way as the scarred backs of Catholics who flagellate themselves, or Buddhist monks who set themselves on fire, or Sunni Muslims who mutilate their girl’s genitals or Shiites who bloody their children’s heads with swords.
Genuine moral virtues – such as integrity, honesty, and productivity are not useful as evidence of religious virtue. To the extent that their practical benefit is visible to everyone, they do not represent the special domain of religion. To demonstrate religious virtue, it is necessary to sacrifice authentic moral values in favor of “religious” values. The particular object of the sacrifice is not important – there is nothing particularly “biblical” about being prolife (the Christian bible just as easily supports the opposite position.) If Christian fundamentalists decided that cutting of one’s hand sufficed as proof of moral virtue, they would be wrong to do so, but not much more so than the numerous other ways that people find to be self-destructive. What is really vicious about fundamentalists in America is that the prey on the most vulnerable –poor pregnant young girls and women, those dying from painful terminal illnesses, the loved ones of brain-dead patients, — and children afflicted with terrible genetic illnesses. One can at least grasp the moral indifference with which a fundamentalist can force a single young mother to abandon her goals and dreams and condemn her and her child to poverty. But what can we say about a parent that chooses a life of suffering upon their child? If we are morally outraged by child rapists, how should we judge a parent who chooses a lifetime of suffering on their own child?
I’m… confused. Did you not read my post? Or were you somehow unable to? Whereas you clearly have no personal experience with a person with Down Syndrome (else you would’ve obviously mentioned it), I can only assume that despite my best efforts at introducing you to my dear, loving sister, you have refused to lay down your agenda for the sake of understanding a real person.
While my piece was meant to prove, if nothing else, that people with Down Syndrome are not suffering any more than the rest of us (and some might rightfully argue they’re enjoying themselves more), you seem to have missed that arc entirely.
You have decided that we are at a point technologically where a woman giving birth to a child with Down Syndrome is doing so by choice. In a general sense, this is true, so I have no argument with you there. But from that assumption, it somehow flows in your logic that “of course these children should not be born, for to birth one is only a willful attempt at proving religious virtue.”
We must go back a ways in our discussion here, because our world views are markedly different. While it may seem that I am diverging from the point, trust me, I am getting to it. Let me introduce you to the God of the Bible to which you casually referred. And let me repeat what I said in the last sentence in case societal cliches kept you from reading what I meant: this is the God of the Bible, not of my making. If you disagree with the Bible, that’s fine. But please understand that everything about me is directed by what I believe about God. I am not talking about some universal god that everyone can understand and accept. I’m talking about the God of the Bible.
God is Holy. That means God is the ultimate in perfection. From that aspect of God’s personality flows the rest, most likely the ones you’ve heard before: love, wrath, judgement, and jealousy to name a few. Before you go too far in imagining God, remember that the Bible teaches that we are made in His image. He is not just a perfected version of man.
The problem of man is our sin, our imperfection. Anything less than perfection is quite obviously imperfection. So unless you’re perfect, you’re doomed. Everyone except Christ has sinned. (Disagree? Answer this honestly: have you ever done anything you knew was wrong before you did it, but did it anyway?) God is perfection, and Heaven is communion with Him. (Forget everything about harps and clouds, there’s nothing about that in the Bible.) He cannot allow imperfection in his presence. As an obvious and natural result, those who’s souls are imperfect must have a different destination after this life. The logical conclusion is that there must be at least two destinations: one in which the souls exist with God, and one in which they do not. So unless you are somehow made perfect before you expire on this Earth, it would make sense that you cannot spend eternity in communion with a God that requires perfection in his presence. Again, if you don’t agree, that’s fine, but that’s what comes from the Bible, and that’s what I believe. I’m just letting you get deeper in my brain.
Christ’s sacrifice justifies us. Not anything that I do. Not good works, or kindness, or love, or any of that. Knowing just how bad our situation is, who Christ is and what he did for mankind, and recognizing him as Lord is the only thing that’ll do. It’s not that those good works, or kindness, or love are absent from the equation; it’s just that they follow our justification and changed mind–they don’t cause it. And it’s a pretty big distinction.
So I say all that so you’ll understand why true Christians don’t do things to please God hoping that it’ll add to our virtue. We do the things we do because our eyes have been opened, our minds have been changed, and we recognize the truth of our situation here on Earth. We are convicted of the things we do that we shouldn’t, and compelled to do the things that we should. (Mind you, I am not discussing those who do great evil in the name of Christ. Those aren’t true Christians at all. Merely calling oneself doesn’t make one a Christian. Consult the Bible if you’d like to discern between the genuine from the self-serving.) None of this life is really about us. When we claim things because it’s what we want, it’s putting ourselves above others, and more importantly, above God.
You should now be able to see why, in my world view, your example about the single young mother doesn’t really justify her having an abortion. Her choice to abort the baby so that she may pursue her goals and dreams is the very definition of selfishness. Yes, her choice is hard, of course! But we all face at least a few very hard choices in each of our lives, and doing extreme wrong to others isn’t ever an acceptable response. Loads of times, I do things I shouldn’t. But responsibility for one’s own actions and accepting the consequences that result are cornerstones of a healthy society. Our prisons are filled with people that selfishly believe otherwise.
In America, there certainly is the widespread opportunity for contraceptives, and if she didn’t want to get pregnant (and wasn’t raped), she already had options. I’m not forcing her to do anything. (I should note, too, that you pretend as if the institution of adoption did not exist in our country.) Your argument would certainly change if the baby in the situation were already born, even if only a few moments out of the womb. But that is the real contradiction in your argument. Once the baby has been born, are you not also throwing her hopes and dreams out the window? If she still deserves to live life like she wants, why not allow her to abort the breathing baby for up to, say, 3 months? We’ll call it a 90-day free trial period.
So back to my sister, the one for whom your overwhelming compassion would rather see dead, are you really so arrogant to tell me that she is suffering? If you are so right, why wouldn’t the mass extermination of all those who are “suffering” be acceptable? It is the same line of logic you hold that allows the lunatic to go on a killing spree of those he doesn’t understand. You just aren’t yet this far along. You call her a freak show, but you do not even know her! What a twisted moral code to which you adhere. For the sake of my own belief in human decency, I can only hope your post was some strange parody which I failed to understand. Or perhaps we really are as depraved as I’d feared.
Admittedly, I should’ve clicked on your link before responding. Turns out you actually may not have read my post, only the title, since you merely cut-and-pasted the last half of your own blog post. Why not the first half as well? Did you feel it wasn’t convincing enough? At any rate, you’ll be hard pressed to find parents that actually have a kid with Down Syndrome just so they can pin on a virtue button. Too bad you’re listening to your girlfriend’s bitter commentary on working with Down Syndrome kids. If they’re such a burden to her, let her know that there are many other opportunities for her to appear compassionate. She doesn’t have to touch the retards.
I am also continually dumbfounded at a Democratic stance to care for the “least of these,” as they borrow Christ’s language to support the governmental funding of universal health insurance, social security, etc. But, if that were the matter, I wouldn’t mind at all. As far as caring for the poor and the sick go, I am all for it of course, and am even open to various ways the government can aid to that end.
But what I just can’t seem to stomach is the relative truth of the whole matter. There are over 1 million abortions yearly in America and yet the Dems don’t consider these people the least of these. By definition, the people that can least help themselves are those in the womb. The older I get, the less this makes sense. I used to be at least understanding of the position: “I don’t like abortions, but I don’t think the govt. should interfere.” I have now changed my mind.
Despite our culture’s best attempts to adhere to relative truth, we still think cold-blooded murder is wrong. And well, I think that’s what abortion is quite frankly, and it should be illegal, but it is especially atrocious with regards to the least, least of these (those unborn with health defects). This very foundational truth outweighs choice and vain conceptions of “suffering.” My wfie works with teenagers through young life, and sadly knows many teenages who’ve had abortions (the numbers would astound you). I now have infinite respect for teenage pregnancies. I will never judge that again.
This curious fellow above, HeriocLife, develops little argumentation and is devoid of coherence. And, as you pointed out, Kev, is riddled with logical fallacies. His own worldview is incoherent, which is probably representative of the fact that he didn’t even read your post…..
if you track back to mr. heroic’s post from which he so creatively cut and pasted here, you’ll note that his comments are full of people who were carpet bombed in similar fashion. evidently, he feels his original post is so convincing that is requires nothing more than being repeated in multiple venues for its innate truth to rise like whey. if you say something enough, it becomes truth, right? and that truth becomes hope for change that we can believe in, etc.
It is true, in fact, that repetition results in truth.
Curious – what about those of the Down syndrome community who feel that the religious right have used Governor Palin’s child for political posturing?
I have read blogs that act as though Governor Palin’s decision to have the baby made her a saint BECAUSE of the misconceptions about Down syndrome.
As I remarked in my blog, “OK. You have an agenda. Palin isn’t pro-choice. She was going to carry any fetus to term, God-willing. But don’t make out Governor Palin’s son to be less of a human being because you want people to vote for her.
And insinuating that God gave her son Down syndrome or some such bullcrap as a way to save millions of unborn children is just sick.”
found here:
http://www.citizenpained.com/2008/09/nro-hotair-others-need-to-stop-with.html
I’m pro-choice but not pro-using-your-children-for-political-gain-and-fueling-misconceptions-about-children-with-disabilities.
I agreed with many of your points, though.
best
ja
PS I elected to not have testing done as it’s potentially dangerous to the fetus.
Well I’m not much a fan of that, either, and that’s why I think her own introduction of her family was appropriate. She introduced them all, said she loved and was proud of them, etc., but didn’t mention that he’s a kid with Down Syndrome. As I’m sure you would agree that while the DailyKos’s unceasingly vitriolic posts about Palin cannot be blamed on Obama, neither can the McCain campaign be blamed for third-party groups getting up on their soapboxes. Obama’s response to the Kos was appropriate because they had gotten way out of hand in their fervor to support him. If the candidates spent time denouncing all the tiny third-party behaviors, however, no discussion of any issues would ever take place.
I can guarantee you that Palin didn’t have Trig to prove some pro-life point. When my parents heard that she’d had a child with DS, their first reaction was, “What a blessing!” It’s not political at all. It’s life.
I’m certainly glad to see a family that, for the most part, lives up the the values system they espouse. But let’s make it clear: no one’s perfect, and my sense of morality doesn’t come from some public figure’s lack of failure. If the Palin’s didn’t live up to anything they claim to believe, it doesn’t make those beliefs any less true. It just makes them hypocrites. And anyway, haven’t we all failed to live up to even our own moral code?
Declaration of the statistic shouldn’t be hushed just because you’re offended by hearing that 90% of positive tests for Down Syndrome end with the mother aborting the baby. That’s simply a statistic. If you’re uncomfortable by the clear cut example of eugenics, maybe you should be doing something to change it rather than plea for others to quit mentioning it. I’m not trying to push a political agenda here; I’m crying out in the face of a horrendous injustice that no one seems to understand or take seriously.
If you have problems with certain people’s or organization’s depiction of Palin’s baby in the political arena, take it up with them. My intent here was to use my personal experience with my sister to show that’s she’s not “suffering” or “afflicted.” She loves, hates, cries, laughs, thinks, screws up, triumphs, and does everything else I do. Not to the same degree most of the time, but at what point on the sliding scale of human value does our society not only think it’s okay, but implore us to cut the fat? Reading people discuss how people with DS aren’t worth having because they aren’t productive enough, that they’re a burden rather than a contributor… it breaks my heart. Please explain why I shouldn’t be allowed to call this stealth eugenics like I see it.
Until you’ve been part of a family that’s had to deal with the public–and shockingly, the medical community–and their misunderstanding of DS, you just wouldn’t understand. When my mother had Rebekah, all sorts of people came out of the woodwork to give her “advice” about how hard it would be, how society wouldn’t accept Rebekah, how Rebekah really wouldn’t be all that smart, and on and on and on.
So should people be using this child to further their political agenda? Of course not. But a little support to Mrs. Palin isn’t undeserved. She had to face a whole culture mistakenly telling her that she was going to put this little bundle of joy through unnecessary suffering and should really consider aborting the child instead. And who are you to declare that God couldn’t have possibly delivered this child for whatever reason He deems fit? Have you not read some of the stuff God did in the Bible? He’s really not at all like the warm, fuzzy, Santa-Claus-in-the-sky god that our culture has designed.
I like this blog. Thank you for writing it.
Why have I not subscribed yet? I’ll fix that right now…
Thank ya, kindly! Always glad to add someone new to the mix. How’s life post-Belmont?
thank you for your tender heart and kind words about such a precious sister.
hugs and smiles, vickey
[...] in response to President Obama’s comments on Leno, that I refuse to go head-to-head with my sister Rebekah, who has Down syndrome, since she has routinely shellacked me in the past. My presence in games of [...]