Dispel the Myths About Down Syndrome

Article by

Donor Officer

March 21 is World Down Syndrome Day and a day for celebration indeed.

Down syndrome, known as trisomy 21, is a genetic disorder caused by an extra full or partial chromosome 21. So on 3/21 each year, a growing number of us pause to recognize the people born with the most common chromosomal anomaly experienced all over the world.

But we should be careful that we are celebrating the right things! World Down Syndrome Day was started to dispel myths about the disorder. Down syndrome itself is complicated, and as a “spectrum disorder,” each person with Down syndrome (and thus, their families) will experience it in different ways. Some people with Down syndrome will grow and experience a certain level of independence as adults; most will require help and supervision for their entire lives. Many also will experience significant, lifelong health complications. Some are sassy and engaging and bold. Some can’t speak at all. Some have families and churches who love and cherish them. Some are bullied every day in their communities and schools.

“World Down Syndrome Day was started to dispel myths about the disorder.”

We are talking about real people who happen to share one physical characteristic, but who are otherwise unique individuals. So, we must not reduce World Down Syndrome Day to cheap, happy, syrupy statements, nor will we neglect to recognize the significant suffering they and their families experience. Both are wrong and reckless.

But we should indeed celebrate the lives of those with Down syndrome.

Treasured in the Church

People with Down syndrome, in particular, need to be recognized and celebrated as valuable by Christ’s church because societies and governments around the world do not see them as wonderfully made people:

  • In the United States, it is estimated that 67% of children identified in the womb as having Down syndrome are aborted. (I say “estimated” because such information isn’t routinely measured by states that gather information about abortions — not all do — so the actual number is not known in the U.S.; European countries are generally better at measuring abortion rates and reasons for abortions.)

  • The stories of families who were pressured to abort their child with Down syndrome can be easily found by a simple Google search of “abortion and Down syndrome.” We should be outraged that so-called “non-directive counseling” is anything but that, despite the protests of genetic counselors as to their stated and attempted objectivity.

  • Noninvasive prenatal genetic testing is both more accurate in detecting Down syndrome and other chromosomal anomalies and has fewer risks of complications for both mother and unborn child than other tests. It has been available in the United States since 2011 but cost and insurance coverage have not yet made it universally available.

“In the U.S., it is estimated that 67% of children identified in the womb as having Down syndrome are aborted.”

The assumption is that as more women have these “safer” tests, fewer children with Down syndrome and other anomalies will be born. There is evidence to support that assumption:

  • Since 2004, all women in Denmark have been offered screening for Down syndrome for their unborn children. More accurate tests are increasingly being offered. In 2014, 98% of Danish children with Down syndrome were aborted.

  • Since 2000 in Iceland, all pregnant women can voluntarily participate in screening, and almost all do. In Iceland, no child with Down syndrome was born from 2008 to 2012 and potentially none since then.

Let that sink in. Not one child over a five-year period was born with Down syndrome in Iceland, and almost no children were born in Denmark.

That does not need to be the future here or there. The reason we have stories of couples outraged that their doctors advised them to abort their child with Down syndrome is because they were outraged — and then they did the even more outrageous thing (according to secular society) and welcomed that child into their lives and homes!

Celebrate People, Not Disorders

So, let us prepare right now to do even more outrageous things, not in our own strength, but in the strength and with the supply that comes from God. Perhaps consider the charge from John Piper outlining how we can find our strength in the strength of God. And then let us be mindful of God’s intimate, intentional creation of little children and his sovereign goodness, even over disability:

You formed my inward parts; you knitted me together in my mother's womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. (Psalm 139:13–14)

“Who has made man’s mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?” (Exodus 4:11)

“It was not that this man sinned, or his parents [that he was born blind], but that the works of God might be displayed in him.” (John 9:3)

Then, let us labor to make our churches places where individuals and families experiencing disability want to be. We will find that not all children with Down syndrome are angels, not all children with autism behave in the same way, and not all parents of children with disabilities process their experiences in the same way. (In fact, we parents are usually much scarier than our children because we have learned how to navigate systems that don’t care about us or our children — and we can bring those same effective but merciless advocacy skills into the church.)

“Let’s labor to make our churches places where individuals and families experiencing disability want to be.”

The God who ordains children with Down syndrome is also the God who saved us when we were not merely disabled but dead (Ephesians 2:1, 5). And our being alive in Christ and resting in God’s promises and drawing on his strength means that even when he ordains hardship like a lifelong disability in an unborn child, we can embrace what God has given us to do in supporting and loving that family, weeping at suffering and rejoicing in joyous moments, holding onto promises he has made and never broken, and experiencing even more of him.

And one way to show we mean it is to celebrate the people he has made with Down syndrome — unique, individually knitted together, bearers of his image and glory, and for the good of all who cling to Christ as Savior.

(@johnpknight) is a Donor Officer at Desiring God. He is married to Dianne, and together they parent their four children: Paul, Hannah, Daniel, and Johnny. Paul lives with multiple disabilities including blindness, autism, cognitive impairments, and a seizure disorder. John writes on disability, the Bible, and the church at The Works of God.