I woke up this morning with a heavy heart.
I look at the world around me and I see so many people advocating for “diversity.” I am trying to wrap my mind around what this word means because to me it means way more than fighting over a bathroom stall. For people like my son Dominic, the fight for diversity is a matter of life or death.
I am the mother of a son who has a condition so dangerous, so threatening to society that his kind is targeted for extinction. For so many years, children with Down syndrome were relegated to institutions. Out of sight, out of mind. Defective. Unwanted. Less. Some brave souls stood up and fought for their children to be included in school settings and in their local communities. Here we are on the cusp of seeing and showing all that can be accomplished, and yet the blackness of ignorance nips at our heels and tugs at our souls. They are coming for the children. This time, putting them away in an institution isn’t enough. This time the stakes are much higher. We are fighting, quite literally, for the right of people with Down syndrome to take their very first breath. To live. To be a part of the tapestry of life.
We, as a culture, are soft. We live in this throwaway society where we try and assuage our conscience by putting things into the recycle bin, not thinking at all about the resources that were made and that will be used so that we can have the convenience of not having to wash a dish. This spills over into every day life. It is “inconvenient” to have a child with special needs, and there are too many out there who would make getting rid of that child just as easy and mindless as throwing a plate into the trash can. One famous professor declared that choosing life for a child with Down syndrome was “immoral” and said that children with DS should be aborted and the parents should “try again.” As if they are taking another turn at winning the lottery. Throw out any ticket that doesn’t match the numbers, folks, step right up and try again to win the prize of a “perfect” child.
The prenatal testing industry is huge. There is so much money to be made, and it is made promulgating fear of the unknown. Here in the US, prenatal testing is common, but many can decline testing for various reasons. The threat in other countries is growing stronger. In the UK, a new testing regime has been adopted and the headlines are all about the improved “safety” of the testing. Safety is a relative term. In Iceland, the termination rate for children identified in utero as having Down syndrome is 100 percent. Let that number sink in for a moment. I am not at all exaggerating when I worry that children just like my son are on the verge of extinction.
The words used in the doctor’s office convey the bias. Mothers can be tested to see if their child is “at risk.” Risk and pregnancy are two words that don’t go very well together. Once the testing is done, there are conversations about “options.” Everybody loves a good euphemism, right? If they tell you that your child is, by their definition, “healthy” (and Down syndrome does not fit into their narrow definition), nobody calls up to discuss “options.” No. Then they say “congratulations,” as if that word is reserved for people whose chromosomes line up so perfectly and neatly in a row.
My heart is heavy this morning.
I post on Facebook often about my little guy. I want the world to see how amazing he is. I balance my fear of stranger danger against the larger picture and think that perhaps, someday, his story will change a perception. Maybe his story will even save a life.
So many people tell me that the first thing they do when they log onto Facebook is check to see if there is something new about Dominic. His face lights up every room we walk into. A couple weeks ago, I went to a party where everybody knew Dom, but I had to make introductions for myself. Down syndrome is polarizing. For those who know someone with DS, they often report being drawn to that person and having a connection. And yet, the fight is real because the other side of the polarizing debate is growing.
Please, my friends, use your voices. The power of social media is strong. Learn more about Down syndrome. Like and share pages that show the truth about children just like my son. Be a voice for inclusion in your community. Get to know a person with Down syndrome. When you see a person with Down syndrome included in a company’s advertising, write that company a note and let them know that you appreciate what they’ve done there.