Four World Down Syndrome Days have passed in my daughter’s life, and this will be the third one I’ve written about. I missed the first one because it was only a couple of months after her heart surgery when we were still taking in how marvelously normal things were becoming.

A lot has happened since then, and I’ve been scanning through some of the other blogs of parents of kids with Ds (it’s all but compulsory to do a post on 3/21 – I’m no different) to hear what they’ve been saying. Much of it has been personal, some of it political – all of it has been eloquent. I hope I can offer the same eloquence, but I will admit to you that I was tempted to let the day go by unrecognized.

But a writer friend of mine reminded me this morning over coffee that one voice left unspoken will leave an uncountable number unblessed for the hearing. I’m really trying not to be overly dramatic when I say this; but I really wasn’t obligated by the rest of the Ds community to write. At that moment, I felt compelled by something much deeper to speak into the din to change a few minds and maybe make a few lives better.

The message is that important, but I’m not sure how much of a blessing it will feel like on first reading. I would be remiss not to warn you in advance that this was a tough message to write and, I am sure, will be just as hard to read.

Most of you know that I’m a pretty avid photographer, so I spend a little time every day flipping through various articles to keep up with what’s going on in the industry. A few days ago, I came across a story about a photojournalist who got access to three psychiatric institutions in Serbia and Kosovo while he was living there between 1999 and 2002.

My internal censor told me that I really didn’t need to see it; but after some hesitation, I clicked on the link and did my best not to let the images that followed steal my soul.

It didn’t work. They can only be described as worse than anything I’ve seen from the Nazi concentration camps. Why? Because by the time the Allies liberated the camps and started documenting the atrocities there, the children were all gone.

But as I looked at the faces of some of the children (some of them clearly with Ds) in those beleaguered, underfunded wards, I admit that I asked God about the broken lottery that landed those children there and my daughter Julia in a modest suburban home in Michigan.

I found out later that as a result of the journalist’s work, funds were raised and NGO’s intervened to improve conditions; but in that moment, it scarily got worse.

At first, I was glad that our society has become so enlightened over the last several years:

  • The average life expectancy for a child with Ds has more than doubled in comparison to age 28 in the mid-1970s when institutionalization was still the predominant answer.
  • Public school inclusion of children with Ds and myriad other disabilities is the law of the land, if not always the practice in the schools.
  • The overwhelming majority of children with Ds learn to read and write and can eventually gain some level of independence.

I felt better knowing that the institutions (in the U.S., anyway) were shut down and we were no longer warehousing our differently-abled children.

But then as I was sitting there pondering it, a quiet voice inside of me answered…

We’re not warehousing them anymore. We’re killing them instead.

When I’ve poked around the internet in the past looking for the abortion rate of prenatal children diagnosed with Ds, a figure of 90% often bubbles to the top of many searches. It turns out that it’s not a true number, but the reality is not much better.

A systematic study of pregnancy data published in Prenatal Diagnosis in 2012 – widely considered the most reliable to date – put the number at closer to two out of three pregnancies being terminated after a prenatal Ds diagnosis. And with the development of new non-invasive blood screens earlier in the pregnancy, the opportunity is only going to grow.

Now I don’t know where you land on the abortion debate; but whether you agree with it or not, the fact remains that there are a whole lot of children with Ds that would have lived except for direct human intervention before they were born. And if they had been born and lived, perhaps they might have surprised their families and communities with their intrinsic good – even if their arrival was unexpected.

The Ds community is a pretty tight one, and we can be pretty brutally honest with each other when the need arises. We share our frustrations and fears for our kids’ present and future; but I can’t point to any family that could imagine life without their kid – Ds or otherwise. Mine certainly can’t. And all you have to do is take a cursory look at Facebook today and there’s a friend sharing a link with a testimony on the unexpected blessing a kid with Ds has on families all over the world.

I guess I’ve said enough about the brutality at home and abroad – and I’m even willing to entertain the possibility that the aggregate lot of people with Ds is on a slow upswing. But my argument is this: Whether we want to admit it or not, the world is still pretty hostile to our friends – and folks with a whole crap ton of other disabilities as well – and it’s in the name of efficiency (they aren’t fast enough), consumerism (they don’t spend enough) and selfishness (they aren’t “part of the plan”).

So okay – now for a little dash of hope:

Let me hasten to add, here, that I can never remember a time in my daughter’s life that I know of her being overtly disdained or excluded. God has blessed us with a marvelous community that treats Julia like a little rock star. But a day is coming when the heartbreak will happen. I don’t know if it will come from honest neglect or thoughtlessness, or worse, from boorish and mean spirited insensitivity; but I do know that whoever it is, they will see Julia not as a person, but a problem. She’ll be a stranger to them.

That’s the real difference. Our community has surrounded and accepted my daughter. They are interested in her life, they know her and have told the world, “She belongs to us.” She has become important enough for people to turn aside and take time to walk with her through life. And that’s where we have a shot at really making a difference.

There are a couple of challenges I want to humbly offer you:

First of all, Get Informed. Take a moment and check out some of the facts about Ds. Most of the statistics I got for this little tirade, I found right here. There’s some sad stuff, but a whole lot of really hopeful stuff as well – just like anyone else’s life.

But more importantly, Make a Friend. The reality is, you can never be a part of the oppression of people you really know, but it’s estimated that only 38% of the U.S. population knows someone with Down syndrome. So take the time to turn aside and really be blessed by one (or more) of these truly amazing people.

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In the end, it’s about the adding more voices to the human conversation. Folks with Ds may not be articulate by conventional standards; but make no mistake – by their very presence, they will speak love into a world that needs it so badly. It is a far more beautiful life because they are in it.

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2 Responses to World Down Syndrome Day ~ One More Voice

  1. Jo Fick says:

    Chris, you make a statement about the difference in the life that Julia knows that many do not, because of “our community”. In those brief words, I believe this is the backstory behind many abortions, for whatever reasons. Because there is no “our community” to support that family. Parents/mothers know that when that child comes, there will be no loving support, no kind embrace. There will be judgment, condemnation, shame, loneliness, rejection and heartache, to say nothing of the impoverishment for all involved. To face that, for yourself, for your child, seems unspeakably cruel. I hear so often in the pro life community, the moral challenge and outrage; very seldom do I hear of creating a world that welcomes that child and family. Our mandate from God is to love one another; not judge one another. Our efforts must be to create a community that welcomes, not shames and rejects. I would guess that a great many of those decisions to terminate a pregnancy are ones weighted with agony, grief, guilt, and desperation. People are not nearly as flippant as presumed. It’s hard to say what it will take, but being a parent of a child with Down’s Syndrome, you have seen the many roadblocks, even when you have good friends, support, love and faith. You, the parents, will be the trailblazers for a world that embraces all the “differently abled”. You will be the ones doing the heavy lifting, for you live this life, and know what needs to be done. And we thank you for it.

  2. Chris says:

    Great insight, Jo. Jesus was one who held high invitation in perfect tension with high challenge. There was always the relationship first with the ones he was expecting to change. I suppose there is a place for the prophetic voice into the culture (Jesus did it with the religious elite pretty regularly), but it’s unrealistic to expect change in a group when all you do is yell at them. You can have all the right answers, but devoid of relationship, those answers will fall on deaf and distracted ears.

    Thanks again for your words!

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