Down Syndrome, Genetic Testing and "Moral, Compassionate Abortion"

I opened up my Twitter feed this morning and Noah's Dad (another parent of a child with Down syndrome, whom you should consider following) had a link to a very disturbing article he was trying to come up with a response to. Here is a link to the article, which unfortunately you'll have to read in order to get the reason why it is taking up a full blog post today: Disability,Prenatal-testing and the Case for a Moral, Compassionate Abortion. The title can clue you in on why I feel there needs to be an outcry about it and should be enough to make your heart sick and your stomach turn...

The author prefaces her article with a disclaimer that she is not advocating for the "genocide of a disabled population or the coercion of women pregnant with disabled fetuses into abortion, that I hate disabled people or think that Down syndrome people don’t deserve to live." That's nice. But I don't care what you preface it with, the article smacks of Eugenics--"a science that deals with the improvement...of hereditary qualities of a race or breed" (www.merriam-webster.com). Eugenics is used as a way eliminating genetic disorders or improving the population as a whole until you realize the implications of it all. Think Nazism--Eugenics was their foundation for the 'scientific' experiments they did on many disabled individuals for the greater cause of making a perfect race. They didn't think it was genocide, either. Trying to improve the gene pool for the rest of society by eliminating the undesirable--born or unborn--is not a moral obligation, it's heinous.  

Throughout the article the author bounces back and forth between advocating for women and the right to a 'compassionate abortion' of a 'disabled fetus' while defending her original claim. But her disability-first language is unmistakable. Using phrases like, "disabled population," "disabled fetuses," "disabled people," "Down syndrome people"--shows she sees the disability standing over and above the person. People-first language gives individuals the respect they deserve as a person first; their disability doesn't define them as a person, and therefore comes second. I have never, nor will I ever, introduce my son to the world as "my Down syndrome child"--Down syndrome is the last thought in our minds; he is first and foremost my son, and he just so happens to have Down syndrome.

The author brings up the way some individuals tend to view/treat those with special needs (like a 'pet' or 'special project' from God). She says cystic fibrosis and fetal alcohol syndrome are not the warm and fuzzy disability people wish more individuals were born into the world with like it has been said with Down syndrome. She argues it is not helpful to anyone, especially when it completely pushes aside the more serious matter at hand (the disability). Do I believe God is teaching me things about himself through my son? Absolutely and I also believe God hand-picked me to be his mom--what an honor! Do I think he is a pet? Uh, no, that's ridiculous. I get where she's coming from though: the people in the grocery store who say "Oh, they're so cute," to the parents of a kid with Down syndrome who is clearly beyond the being called "cute" stage (i.e. teenage-adult years) and who directly addresses the parents instead of the person with Down syndrome. Yes, I can heartily agree with her on that. My son is not a pet. All this being said, I don't believe I have an unrealistic view about my son's (or any one else's) disability. I don't know much about cystic fibrosis other than it is a serious illness that can be quite hard to endure. But I don't think parents are heartless to have brought their child into the world in spite of it. I do know someone with fetal alcohol syndrome and the family she has been adopted into adores her; she is a ray of sunshine that brightens her world. From what I know of Down syndrome having Marty, I can wrestle with the let-downs from time to time and say "Yep, I wish it were a little easier." But I can't imagine life without him and he has so much love to give! Why would you ever deny anybody the chance to bring their gifts to life because of a prenatal diagnosis that tells us so little about who they really are? Just because there is a diagnosis--no matter what it is--doesn't mean they don't deserve a chance to show the world what they are capable of and change it while they are here, for how long or how brief of a time that is. 

Down syndrome is random, with no known cause and has been a natural occurrence in many species for ages and ages and while there are some physical disabilities and cognitive delays that come with the extra chromosome, alone it is not debilitating or a cause of great suffering to those have it and to those around them who don't--her 'facts' about Down syndrome are highly inaccurate. IN FACT about 96% of those with Down syndrome are happy with who they are. That is an incredible stat!

My poor child with Down syndrome who suffers?
Yeah right! "fearfully & wonderfully made!" (Ps. 139:14)

I think the author is doing a serious disservice to women saying that they can't handle all this apparent 'suffering' and shouldn't have to. While I don't consider it a plight to raise a child with Down syndrome, I know that every day won't be sunshine and roses. There are definitely days of frustration where tantrums can get the best of us (and all the mothers of toddlers said "Amen"). It does take Marty a little longer to figure things out and I can get weary and discouraged not seeing results as fast as we would like. He has a heart defect. He requires braces to help with his weak ankles. He has low muscle tone and can't jump yet...but he's trying. He tries at those milestones until he gets them and the delight on his face and ours is worth all the hard work and effort it took to get there. Would I abort him having known he would have some of these issues and apparently (according to the author) 'suffer'? Absolutely not! Marty needs physical therapy to help with balance, occupational therapy to help with some of his fine motor skills, and speech therapy to help with his oral motor abilities--but he is one of the most hard-working, fun-loving, easy-going kids I know. You be the judge, does this look like the face of one who 'suffers'? 

Marty teaching his younger brother how to play

I have a typically developing son who is younger than Marty (by the way, they absolutely adore each other and play like any brothers would) and there are days of frustration with him as well. I know there are moms who struggle day to day with their child's disability and believe they've been dealt a bad hand in life. Along with "Why, God?" they are asking "Why me?" I feel for those women. I was there in that dark place of uncertainty with outlandish fears and doubts about the child in my arms who wasn't what I had imagined. I remember wandering near the toy isle at Target thinking "He will never play with any of those" (which I look back on now and laugh because we can't seem to walk through our house without stepping on toys). While I believe myself to be a fairly strong woman, I know I am only as strong as the people I surround myself with--especially then when it felt like my whole world had been flipped upside-down. My family and close friends circled the wagons and accepted Marty with so much unconditional love; they are his biggest fans. I have a church family that's incredible and I belong to a Down syndrome group in my area that is also a great resource and support. The solution to the mom who's struggling is not the author's idea of so-called 'compassionate abortion'!

If there was a genetic test to determine if an unborn child would develop chronic asthma or one day get a rare cancer that might end their life in adolescence, would it be OK to terminate the pregnancy based on 'compassion'? Those kids in the womb who do not have a genetic code telling us what might be in store for them get a fair chance at life. Why do we feel it alright to take that chance away from others believing that their quality of life is diminished based on a prenatal genetic test? The author's assessment of a child one day thanking you for aborting them because they avoided so much suffering in life is beyond absurd! The truth is that inconvenience, fear, doubt and worry lies on the shoulders of the parents, not the child's.

The author mentions 'morality' and 'moral obligations', but what is her standard on which to base this? Who gets to decide what is moral? Left to our own standard, we fail horribly because what is considered moral to some might not matter to others. I could steal your coat and you might think that it is morally wrong because it was yours to begin with but my standard might be that I was cold, so I take it. You see where this mess gets us? I have picked my standard, God's Word, which I have tried and tested and it has never failed me. What is yours?

Bottom line: if you believe the Bible is God's word it says that every human being is made in His image (Genesis 1:27). If we are all made in his image, we all have value. Every single one of us--saint and sinner, genetically 'flawed' or not. The simplest form of human need stems from God, our Creator--and that is to love and be loved, which is capable no matter how many chromosomes you have.

Since the author does have a Christian background, I believe she might struggle with the problem of evil. We don't know why there are people who are born into this world with debilitating illnesses or a disability that is caused by the carelessness of their parent. Our world is fallen; it's not fair. I have my fair share of "Why, God?" Those moments mess with your theology for sure! But I may never know the answer to my "Why, God?" questions this side of heaven. And that's OK, because I'm not called to know "Why?" I am called to love. In my opinion, a person who poses the answer to a prenatally diagnosed disability is 'compassionate abortion' has given up wrestling with angels.

What would happen if we decided to put love first? Our problem is that we only want what we think is perfect, appealing, convenient; what is easy. If it's not what we wanted, we strive to find a solution--any solution--to fix it. The author's solution is so unbelievable to me, especially when it comes under the guise of women's advocacy. It's breaks my heart to see that in her apparent advocating for women, she has disconnected them with the children they are connected to so intricately. A woman's body has not betrayed her. A baby isn't just a fetus who's existence is recognized once they can live on their own outside the womb. In this article, a miracle has been reduced to a blob of tissue, a mom of a child with special needs has been reduced to a victim, and a treasure has been reduced to a burden. We can get so caught up in our American mindset--monetary cost of things, the right to the pursuit happiness--it makes us un-human in our reasoning and thought patterns. So is birthed the idea of 'moral, compassionate abortion'. It comes from an un-human mindset that reasons like an animal fleshed out in the Darwinian concept of survival of the fittest. Our idea of what is lovable is skewed, our idea of what it means to 'suffer' is limited when we see our world through the lens of convenience and rights based on lies about personal happiness. We forget that children are gifts we receive from God which come in a wide variety of packaging yet all bear the same image of the Creator. Give them a chance to show the world what they're truly made of! Give love a chance!

Marty: "God knew me!"

For the parent who is struggling, may I encourage you to seek God for wisdom who gives it freely to those who ask (James 1:5). He has been my "constant source of stability" (Isaiah 33:6) throughout my entire parenting journey, starting with my firstborn, Marty, who has Down syndrome. We didn't know he had Down syndrome, but God did. He revealed to me in the early morning before we were even told the news that Marty was known by God and loved, taking me to Psalm 139:14, which I believe he gave me especially for him: "I praise you because I am fearfully and wonderfully made." The next couple months after we knew were a rollercoaster of emotions. I couldn't do it without my Jesus, who is faithful and near to those who mourn. I don't buy that Christian cliche that "God only gives you what you can handle" because my Bible tells me there were plenty of men and women God gave tasks to that couldn't handle-it--but He could. Let God handle-it. Remember, "I consider that our present sufferings are not worth comparing with the glory that will be revealed in us." (Romans 8:18) God is just as much at work in you as he is with your children if you will allow him. And don't let a so-called women's advocate tell you that you are wrong or out-of-touch for believing that. Let God's word be your guide and your anchor.  "Cast all your anxiety on him because he cares for you." (1 Peter 5:7)~*