Take a look at these photos:
What do you see when you look at these photos? The first and perhaps the most obvious is that all of the people in these photos have down syndrome, but what else? I see a proud boy giving a thumbs up, a laughing little girl, and a goofy couple having fun together. You probably see the same emotions and actions that I do.
The people in these photos are somebody’s children, siblings, friends, cousins, students, coworkers. They are silly, fun, happy but experience anger, pain, and sadness too, just like we all do. The only difference is the fact that these people have Down syndrome.
“Okay, so what?,” you may be asking yourself. “I know what Down syndrome is, who cares?” Well, I care, and you should too. Here’s why:
Have you heard of Nuchal Translucency or NT? NT is a type of prenatal screening done during the first trimester that tests for a range of genetic disorders like Down syndrome, other chromosomal abnormalities, heart defects, and skeletal dysplasia (Gottfreðsdóttir and Björnsdóttir).
“Okay, great,” you may be thinking, “These prenatal tests are good.” I would not disagree. Making sure you have a healthy baby is important and I’d like to assume most women would feel better knowing whether or not their babies are at a higher risk for developing certain disorders or conditions.
Particularly in Scandinavian countries, most notably, Iceland, this type of testing allow mothers to decide if they want to continue with their pregnancy or abort. I do not want to delve into the ethics of abortion as a whole, rather I want to challenge the ethics of aborting a child with a disability simply because of these screenings and what they imply for expecting parents.
Before getting deep into discussing these screenings, it is important to understand what eugenics is as a concept. Wikipedia defines eugenics as “a set of beliefs and practices that aim to improve the genetic quality of a human population, historically by excluding people and groups judged to be inferior and promoting those judged to be superior.” Say what you want about Wikipedia, but this definition is spot on. One example history has shown us of eugenics is Hitler and the Nazi regime, aka, the genocide of Jewish people. We all know the story. Hitler believed the Aryan race to be superior and anyone who was not of the Aryan race, such as the Jews (although not just the Jews) were killed. History has proven this many times over with different types of minorities (racial, sexual, etc…) but that is a different blog post for a different day. I’m not trying to compare racial discrimination with disabilities, but hopefully my example makes sense within this context. What I am saying is that Hitler is one of the worst examples we can think of when we think of eugenics as it turned to genocide.
With that, my argument (and many other peoples’ arguments) are that these types of prenatal screenings are aiding in the practice of eugenics. According to an article by CBS News ,”Since prenatal screening tests were introduced in Iceland in the early 2000s, the vast majority of women — close to 100 percent — who received a positive test for Down syndrome terminated their pregnancy.” That is a staggering statistic. But to be fair, another article by Icelandic Magazine, in response to CBS, claims that this number is misleading and that about 85% of women in Iceland opt for the screening and about 15-20% of women choose not to have the NT screening. The article also claims that of the women whose tests show a likelihood of their children being born with Down syndrome, about 15-20% choose to carry the pregnancy to term. But I wish the article would have cited the total percentage of women birthing children with Downs, not just the 15-20% of women who decide to carry the pregnancy to term. The article seemed a bit defensive in its response to CBS and they make their numbers look larger than they are, as 15-20% seems like less women are aborting, however, the total number of women testing positive for babies with Downs cannot be big. And this number doesn’t account for the women who have babies with downs who do not opt for the NT screening.
However, it is also important to note that the screening will not always be accurate and someone who shows no signs of having a baby with Downs may still have a baby with Downs and vice versa. It is also important to understand the cultural differences of Icelanders. The article makes clear that no religious ideology, political ideology, community, or its leaders have any say in the moral obligations of family planning. Also, Iceland has a much smaller population than the U.S. – about 364,000 as compared to about 328 million in the States. It’s only natural that the number of abortions in Iceland seem huge.
So perhaps Iceland isn’t actually practicing eugenics. However, a study conducted in 2005 reported that in Iceland in 2004 all fetuses diagnosed with Downs were aborted (Gottfreðsdóttir and Björnsdóttir). Of course the numbers have varied from 2004 to now but the fact remains that over the past 10 or so years, only 2-3 babies are born with Down syndrome on average each year in Iceland. That is not very many. And while some people may think this is a good thing, I do not.
The 2005 study prompted one woman to say of herself being a mother to a child with Downs,
“I did not have to face these choices. This situation was
not yet possible when I had my child. My perspective
reflects my experience. But what impression does it
give people if all fetuses diagnosed with Down’s syndrome are aborted? For us, the parents of these children, it raises the question … is society departing from
the basic principle of diagnosing defects which are so
serious that it is not worth living with them?” (Kastljo´s,
August 11, 2005)
So does the test itself imply that disabilities in and of themselves are a burden to society? That a typical child is to be more loved, valued, and wanted? I, like this woman, would say, yes.
Regardless of what we each think about abortion, can we justify aborting a baby for a disability that is not typically desirable? Is to be born with Down syndrome bad? Does having Downs lessen a person’s quality of life? Does the same apply for being born with a heart defect or some other type of genetic disorder? Is the eradication of a disability, any disability, bad or good? Are we helping the population or hurting it?
I, of course, am biased. Some of you know I have a twin brother with Down syndrome, also this entire blog is about advocating for disabilities. So, of course I’d say it’s wrong to abort a baby with Downs. I’m too close to it. Of course others have different opinions and for those people I challenge you. If we look back at the Nazis, I think everyone would agree that the attempt at eradicating Jews was horrible. Why do we justify it when it comes to disabilities? I can assure you people with disabilities are not any less valuable or have lives any less fulfilling than the rest of us. Their lives may be different and fulfilling in ways that we do not think of. We think of success as having a stable job, with a healthy family, but there are variables. Success looks different for everyone. For my brother a fulfilling life is doing a jigsaw puzzle, watching The Walking Dead, irritating our father, and giving 50 hugs a day to our mother and that sounds pretty good to me.
There are times of course where I wonder what his life would have been like had he been born typical like me, and sometimes wish he could have the typical young adult experiences, but at the end of the day, I , nor my family, would have him any other way and I truly wish other people would feel that way about people with disabilities.
“Facts about Down’s Syndrome and Pre-Natal Screening in Iceland.” Go to Frontpage, 26 Mar. 2018, http://www.government.is/diplomatic-missions/embassy-article/2018/03/26/Facts-about-Downs-syndrome-and-pre-natal-screening-in-Iceland/.
Gottfreðsdóttir, Helga and Kristín Björnsdóttir. “‘Have You Had the Test?’ A Discourse Analysis of Media Presentation of Prenatal Screening in Iceland.” Scandinavian Journal of Caring Sciences, vol. 24, no. 2, 2010, pp. 414–421., doi:10.1111/j.1471-6712.2009.00727.x.
Quinones, Julian and Arijeta Lajka. “‘What Kind of Society Do You Want to Live in?”: Inside the Country Where Down Syndrome Is Disappearing.” CBS News, CBS Interactive, 14 Aug. 2017, http://www.cbsnews.com/news/down-syndrome-iceland/.
McMahon, Sara, et al. “Fact Check: No, Iceland Is NOT Systematically Eradicating Down Syndrome.” Icelandmag, icelandmag.is/article/fact-check-no-iceland-not-systematically-eradicating-down-syndrome.