Celebrating World Down Syndrome Day

World Down Syndrome Day (WDSD) is observed on March 21 every year. On this day, people with Down syndrome and those who live and work with them organise and participate in activities and events to raise public awareness about people with Down syndrome.

To be honest, the inability to have a conversation about the 9th week screening test without it being reduced to pro-choice/anti-choice sound bites is exasperating (as is the lack of nuance and depth in conversations on any other number of topics going on right now.)

This is likely the last generation of people with Down Syndrome that we will see. I’ve written, deleted, rewritten, and deleted again paragraphs and paragraphs about this. Ultimately, though, we seem dead set on the direction we’re heading. The desire to control our circumstances, the desire for certainty, though utterly illusory, is too compelling.

This has at various times felt infuriating or heart-breaking to me, though it hit me yesterday that no matter how much we screen them out, chromosomal trisomies and other genetic and chromosomal atypicalities will still be here. They occur in nature and will continue to do so, like the triploid apple trees. So perhaps one day when we, society and human beings, are mature enough, we will let them back in and be whole again.

In the meantime, I’m celebrating how lucky I am to have the son I have, who dressed up today as Fancy Man, using a purple towel as a scarf.