Celebrating Down Syndrome?

/ Andrea

This past Sunday was World Down Syndrome Day, and many of us who love someone with DS posted their smiling pictures on our social media feeds (me included). But is Down Syndrome really something to celebrate?

Many people want to eliminate Down Syndrome. By this they mean eliminating people with Down Syndrome in the womb. Down Syndrome cannot be eradicated in any way other than killing people. It is not a disease that can be cured with medicine or prevented through vaccination.

On the other side are those who attempt to justify their right to exist by highlighting the successes and accomplishments of people with Down Syndrome, and by the fact that many people with DS lead happy, fulfilling lives.

Is that it? Is our worth dependent upon whether we are successful or happy? Or in whether or not we may be perceived as a burden to someone? If so, then many of us miss that mark. Shouldn’t our inherent value as human beings be based on something more solid than how we contribute to society? Or any number of other ways we use to justify our existence?

Let’s be honest: having a child with Down Syndrome is hard. And being a person with Down Syndrome is hard. There – I said it.

I would also like to say that being a parent of any child is hard. And being a human being in this dark and cruel world is also hard.

Just because something is hard does not make it meaningless or invaluable. We all – all! – have inherent value and dignity by our sheer existence on this planet, whether we are capable of producing something deemed valuable by the world, or not.

None of us should have to justify our right to exist. Are we not arguing about whose lives matter even now? We are fighting over the perceived value of certain categories of people in our streets even as I write this.

So on this World Down Syndrome Day, yes, I celebrated Ben for who he is. He may not be judged worthy of life by society’s standards, but society is wrong. He is worthy. And so are you.

8 thoughts on “Celebrating Down Syndrome?”

  1. Thank you. Just thank you.
    I remember feeling unsettled when the reality tv show about young adults with Down Syndrome debuted. The trailers were full of kids being celebrated for doing “normal” teen activities. The reviews were all about what they could *do*…accompanied by cheers of “isn’t that great!!” What about all those who can’t *do*? The world again judges value in a broken way. Value is intrinsic and doesn’t change based on what we do.
    Blessings.

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    • It was hard to realize that Ben wasn’t going to be like the superstars that we see in the Down Syndrome world. Those are the ones who are held up as examples of what it looks like to live with Down Syndrome, and for a long time I wasn’t aware that Ben’s abilities might not meet that standard. I feel that value is placed on being “more alike than different” which is great when you’re advocating for inclusion, but a dangerous presumption when you’re advocating for the simple right to live.

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  5. May God bless Ben and Your Family, thank you for writing this beautiful piece – We have a daughter Phoebe who is now 6 who has Down Syndrome and we resonate with what you have written. My 11 year did this video for Sunday – https://www.youtube.com/watch?v=2w2LcsYjkNA and we did an interview with our Christian Radio station in London https://www.premierchristianradio.com/Across-the-UK/The-Midlands/Diagnosis-wasn-t-devastating-but-a-source-of-great-blessing
    Thank you again for writing, I need to read more articles like this may God bless you, Paul

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