“Iceland is on track to eliminate Down syndrome” the CBS special stated.
As the mother of two children with Down syndrome, both of whom I chose through adoption, it is difficult to put into words the sting of this segment and the fact it would be aired in the United States with a tone anything short of complete condemnation.
This was not the first time I had heard this story. As someone with my ear to the ground in the Down syndrome community, this was old news. Yet the ripe stench of this story does not lessen its sting.
I’ve watched the news segment numerous times and read much of the comments from others who have also watched. Ultimately, I’ve come to the conclusion that this is not a pro-life vs. pro-choice issue. Yes, those components play a role. I think it’s safe to assume people who are pro-life would be less likely to choose an abortion if given a positive in-utero diagnosis for Down syndrome (not to say they wouldn’t chose an abortion, just that they’d be less likely). But this is not about abortion, not fully.
This is also not about being able to control one’s happiness. The segment showed how Iceland justifies eliminating abortion by stating people want healthy children, and to have some sort of control over one’s happiness or the happiness of their family by not allowing a child with Down syndrome to be a part of it. Yet the mass termination of people with Down syndrome should never be tied to one’s happiness, health or wholeness. Life is too tricky and out of our control to think otherwise. This argument cannot be used here.
Rather, the movement toward eliminating Down syndrome or the concept that a person can choose to not give birth to a baby solely based on a Down syndrome in-utero diagnosis is rooted in fear and ignorance.
Here’s the thing, the only people who should have a say as to what life is like with Down syndrome are people who have Down syndrome and those of us who are in intimate relationships with them. That’s it. Not the scientists, not the doctors, not the woman who just found out the baby growing in her womb has an extra chromosome.
If this was the case, the Down syndrome narrative would sound much, much different.
As a prominent voice in the Down syndrome community I have interacted with hundreds, if not thousands, of people who either have Down syndrome or have a loved one who has Down syndrome. Hundreds of people have shared with me their story of fear and devastation at their child’s initial diagnosis, and how quickly that became gratitude and elation. Hundreds of people have told me how their life is richer and better off because of their loved one with Down syndrome. And the complaints people with Down syndrome have, have little if anything to do with Down syndrome and everything to do with the surrounding society. A society that has yet to see their value and worth, making their lives all the more difficult.
Those of us who have dedicated our lives to advocating for Down syndrome have not been sitting around twiddling our thumbs. We are working tirelessly and going hoarse shouting the worth of people with Down syndrome. We are using everything at our disposal to help the world wake up to the fact that our lives and our world are better with Down syndrome in them. We are doing everything we can to change the current Down syndrome narrative.
But our voices are being squelched by fear and ignorance, the driving forces behind what is happening in Iceland and in our very own backyard. And the story CBS aired about Iceland eliminating Down syndrome confirms the need to switch the Down syndrome narrative is more important than ever.
I am well aware that when my children with Down syndrome step out my front door they are stepping into a world which continues to refuse to see their worth. When people can look at my children, my son and daughter, and then defend and encourage the idea of aborting a child based solely on their Down syndrome diagnosis, it makes this mama bear’s blood boil.
If you do not have Down syndrome or have a loved one who has Down syndrome in your life, you do not get to speak in this arena. With each child who has Down syndrome we lose to an abortion, we are giving birth to fear and ignorance.