The following was originally posted last year on World Down Syndrome Day. Reposting because it still holds true.
Today, March 21, marks the ninth annual World Down Syndrome Day, a day now recognized by the United Nations as a day of awareness and celebration of Down syndrome all over the world.
There is a lot of pressure on us parents of children with Down syndrome, on us advocates, to advocate our hearts out today – to raise a flag, to shake our fists, and to say something profound.
Frankly, I’m weary. Weary that we’re still fighting the same fights for compassion, respect, and inclusion. Basic human dignity. Weary that behind the scenes, we have trouble agreeing on what, exactly, we should be advocating for.
All I want is to raise my kids in a world that’s going to see all of them as valuable human beings. All I want is to be able to go somewhere – anywhere – without constantly being on edge, waiting for someone to drop an R-bomb. All I want is to be able to take my kid to the doctor’s office and not have to educate them about Down syndrome facts and myths. All I want is to be able to count on my kid being welcome to attend the same school his siblings attend. All I want is for people to see my kid as a kid – yeah, a little different, but not some lowly or otherworldly creature who should be disdained or fawned over. All I want is for people to see me as just a mom – one who is defined far more by the sheer number of kids she has than by the fact that one of them sports an extra chromosome.
I wonder if there will ever come a day when our advocacy will no longer be necessary.