This is something that has been on my mind pretty continuously since I read this article a few nights ago. Matt and I discussed it for about an hour, until 1:00 a.m. (I am not a night owl as he is; I am exhausted). Writing usually helps, so here we go:
This is the article Matt forwarded to me, from Slate:
http://www.slate.com/articles/news_and_politics/politics/2012/02/rick_santorum_prenatal_testing_and_abortion_tucker_carlson_s_classic_essay_on_prenatal_testing_and_the_abortion_of_down_syndrome_babies_.html
It was difficult to read, and I made the mistake of reading about the first 5 or so responses/comments at the end of the article; fortunately I stopped myself there. I am all about the Internet and freedom of speech and whatnot, but sometimes I wish we were still in an age when, if you wanted to respond to an article, you had to type a letter, get a stamp, and put it in the mail.
I’ve written before about worrying about David being teased or bullied for having a developmental disability. Sometimes I have wondered if maybe I have made too big a deal out of this, because reaction to the statement, “my younger son, he has Down syndrome” has been universally positive, and I feel confident saying there is more understanding and acceptance of disabilities of all kinds. But one of the comments following the article said something to the effect that people with Down syndrome range from “mildly mentally retarded to having just a few more IQ points than a rutabaga.”
Yes.
So maybe I will not drop my guard on this one.
The essay was re-published because of the latest controversy over a provision of “Obamacare,” that would mandate that every pregnant woman be offered prenatal testing that could identify Down syndrome and other disorders, and that the testing be provided for free (pretty sure that's it, sometimes it unclear what is "mandated").
I started writing this a couple of days ago, and it has been difficult to finish, without the entry being 50 pages long. I’ve had a hard time narrowing my focus, but I think I will concentrate on three things (1) prenatal diagnosis of Down syndrome and how a pregnant woman receives the news of the diagnosis, (2) something Tucker Carlson is not advocating in his essay but seems to play a major role in a lot of folks’ thinking – that people with Down syndrome are an economic and societal burden that our society should not have to bear, that people with Down syndrome only drain money from healthcare and educational systems, money that they would never be able to (re-contribute?) through tax dollars because they will never hold high-paying jobs, and (3) aside from the financial burden, Down syndrome is so awful that the only decision that would make sense is to terminate your pregnancy.
(1) Prenatal testing: there are a number of evidence-based, peer-reviewed journal articles that offer recommendations about the language used, and the type of information presented, when a woman received a prenatal diagnosis of Down syndrome [or any other serious health issue for the fetus, I would imagine, but honestly, I can only read so much]. If you have endless amounts of time:
http://www.brianskotko.com/images/stories/Files/ajmgprenatalguidelinesfinal.pdf
http://www.ndss.org/index.php?option=com_content&view=article&id=153%3Aposition-papers&catid=54%3Apublic-relations&Itemid=140&limitstart=4
http://www.ndss.org/index.php?option=com_content&view=article&id=153%3Aposition-papers&catid=54%3Apublic-relations&Itemid=140&limitstart=5
http://www.ndss.org/index.php?option=com_content&view=article&id=153%3Aposition-papers&catid=54%3Apublic-relations&Itemid=140&limitstart=3
The concern, by the “Down syndrome community,” (of which I suppose we are now a part) is that women routinely receive outdated or inaccurate information about the health, developmental, and quality-of-life issues associated with Down syndrome, and that this information leads many women to conclude that the only reasonable decision to make is the decision to terminate their pregnancies.
I don’t want to get into a general debate about abortion because to me, this is not about the right to life/choose per se. About 90% of women who receive a prenatal diagnosis of Down syndrome choose to terminate the pregnancy; since I don’t think 90% of people usually favor abortion, there seems to be something about Down syndrome that makes it an exception to the rule (if it’s your rule) that abortion is immoral and should be illegal. There’s something about Down syndrome that makes it okay for one person to say to another, the child you are carrying should not be born.
(2) I am troubled by the reduction of the worth of a human life to strictly monetary terms. I refuse to accept the premise that a person’s value can only be measured by the amount of income tax he/she generates, balanced against the “drain” or “burden” he or she is on public services, the healthcare system, etc. What about being kind and loving and, you know, good? And I’m not talking about my son here, I’m talking about the rest of us.
(a) OBTW, Matt and I work hard and contribute plenty to the tax base, and the vast majority of our son’s care is paid for by private insurance.
(b) I’m almost 37 and have met a lot of people in my life, from all across the economic spectrum. I am pretty comfortable asserting that the size of your personal tax contribution is not associated with any other form of worth, blessedness, or right to be alive. It just has to do with how much money you make, or have.
(c) There are a lot of other people who don’t contribute much in the way of taxes, right? People in prison, whether for minor offenses or violent crimes. People who are homeless, have serious substance abuse problems, and those who deal with all manner of physical and mental disabilities. Older people in nursing homes. For that matter, stay-at-home moms and folks who are plenty wealthy but have the means to hire an accountant to make sure they pay as little in taxes as possible. I know this is the United States and we love stand-on-your-own-two-feet independent types of folks, but I’m thinking there may be other, more important, ways to evaluate the worth of a person.
(d) So my son is likely not going to contribute a lot to the economy. But neither is he going to ruin his employees’ lives by embezzling their retirement funds, he is not going to run a corporation that screws the government out of millions of dollars, he is not going to earn money in unscrupulous ways, be it insider trading or tax evasion or fraud.
See, there’s more to it, right? Than how much you pay in taxes?
Oh, and on a non-financial note, he is not going to grow up to write a thoughtless comment on a blog that compares another human being to a rutabaga, for the whole world to see.
(You may be thinking, surely not too many people really believe this stuff? Just read some of the other responses to the Slate article. And I read this type of thing all the time. People feel pretty free to express these exact opinions)
I apologize if the next section is offensive or hurtful to any reader who has terminated a pregnancy due to a prenatal diagnosis of Down syndrome or other condition. That is not my intent. It’s just that so many of the articles/entries I have read lately are … venomous, vulgar, and just plain mean when discussing people with Down syndrome and the parents who choose to have them. So I’m feeling a bit defensive.
(2) What is up with Down syndrome being tagged as the worst thing a kid can have “wrong” with them, the worst thing that could happen to a person? Let’s say you want to get pregnant and once you do, testing reveals that, thank goodness, your baby does not have Down syndrome. Whew, dodged that bullet. You … understand … that there is pretty much no limit to the other ways your child might not be exactly what you planned or hoped for? There could be any number or other health problems that come up, lots of learning issues that aren’t identified until much later, or hey, the kid could grow up to be a violent career criminal or a corrupt politician or, just a complete asshole. No guarantees. ... I would much rather my kid have Down syndrome and live at home the rest of his life, than have him grow up to be someone who hurts people. You know? 9/11 hijackers, Osama bin Laden, Ted Bundy, Son of Sam, etc., etc., none of them have Down syndrome and they managed to do a lot of damage, right? Bring on the tax burden, I'm proud of him. I suppose some could say that's a false dichotomy or whatever, or not a good comparison or metaphor or something, but this discussion is full of extreme language (burden, retardation, abortion, etc) so why not jump right on in??
Take a look at the picture that’s posted with this entry. That is my son, David. He has Down syndrome. In his first year of life, he received hundreds of thousands of dollars in medical care. He will be slow at learning a lot of things. He may never hold a job that earns a sustainable wage, or move out and live totally on his own. He may not go to college or read a lot of important books. He might depend heavily on the social service system for most of his life. What I want people to understand is, all those things could well have happened, or might happen in the future, even if he didn’t have Down syndrome. Those are things that happen to, you know, people, and I don’t understand how terminating this pregnancy, and not having this child, does anything to guarantee that the next time, you’ll conceive a fetus/child that'll be problem-free.
(Again, I apologize. I know choosing to terminate a pregnancy is one of the most difficult decisions a woman ever makes. Again, feeling defensive.)
Two final thoughts: (1) I am still not ready to jump from the pro-choice side over to the pro-life side, and I’m still not ready to tell any individual woman what she has to do with her pregnancy. The only thing I ask is that if you are the medical professional conveying test results to a pregnant woman, or if you are the woman weighing her options, that you understand that Down syndrome is not the end of the world. It might seem like it, for awhile, if it’s your kid, but it’s not so bad, I promise. (2) I am thinking of the folks in the United States who have the most power, the most influence, the most money. I obviously don’t know them personally, but I would bet that my little David is way more fun to hang out with – more interesting, more entertaining, and certainly a handsome guy. So what if he has to have some speech therapy and probably won’t have a great-paying job? So what?
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Okay so I lied, those are of course not my final thoughts. Other stuff I wrote but couldn’t make fit in with the rest:
** 1** A book I read recently contained an essay written by the mother of a child with a disability, in which she stated she often hears from other parents, “I don’t know how you cope with it all, I couldn’t do it.” The mom offers that this is more than just a platitude, it’s a defense mechanism – “Maybe if I officially declare that I would not be able to cope with this situation, perhaps God or fate or Mother Nature will spare me, and will give another family a child with a disability.”
** 2 ** I said I didn’t want to get into a discussion about abortion because I don’t think that’s really the issue at hand. And I don’t know that it’s really so much about the fetuses/babies that have Down syndrome. Over a year ago I visited a website about Trisomy 13 or 18, I can’t remember which one. The author of the site was urging women who have received a prenatal diagnosis of T13 or T18, and who have been told their baby will be stillborn or die shortly after birth, to continue their pregnancies and deliver their babies, rather than abort. One sentence really stuck in my head: “remember that the child you are carrying is the same child you conceived.” She’s right – nothing has changed about the baby, the only thing that’s changed is our awareness of something about it.
It’s not about the babies, it’s about us. It’s about our inability to tolerate weakness and dependency and imperfection, our inability to accept that the baby we dreamed of is not going to be born, our fears about what other people might say and that we (and our child) will have to face more difficulties than other families.
Telling a woman she should consider an abortion because her baby has Down syndrome suggests that to have a baby that is not physically perfect is not acceptable. That to have a baby that might require a lot of medical care is more than a parent can, or should have to, handle. That to give birth to a child that might never grow up to be a fully independent American, is going to somehow ruin something for the rest of us. That someone like my son does not have the right to live, because he had a hole in his heart and he’s two years old and can’t walk yet.
** 3 ** Let’s say we eliminate Down syndrome, by aborting every single fetus that tests positive, killing the newborns who slipped through the prenatal-testing cracks, and waiting for all folks currently living with Down syndrome to die. Whew, society is done with this awful burden. Now, let’s tackle all the other ways kids can grow up to be financially burdensome adults, only holding minimum wage jobs, never living independently. Let’s make sure that no one ever gets cancer or is in a horrible car accident or other trauma, because those cost millions of dollars too. Old folks in nursing homes, because once someone is 65 years old they’re not going to be earning any more money anyway. All the kids who have cerebral palsy, since they need a lot of services too, but don’t forget the doctor who screwed up the delivery and made the mistake that caused them to have cerebral palsy in the first place – they should go too, right? And cystic fibrosis. And ...
(There’s a reason so many of these articles use the word, “eugenics.” It does makes you think about that Hitler guy, right?)
