Why I Hate World Down Syndrome Day

I hate March 21st. I mean, I have nothing against the actual date. What I hate is World Down Syndrome Day.

“But, Erin…” you say with a rather hesitant voice, “you have a child with Down Syndrome.” I know. Believe me, I know. And I LOVE her, but I don’t need a special day to celebrate her (other than her birthday, of course!).

So, I ignore it. Or I do my best anyway.

Unfortunately, when your Facebook feed revolves mainly around the words “inclusion,” “special needs,” and, oh yeah, “Down Syndrome,” the March 21st hoopla comes early and often.

First there’s the socks. Stick with me here. Chromosomes look like socks - no, really. The idea is that you’re supposed to get everyone you know to wear mismatched socks and Rock Their Socks. Then people will notice and ask about them, and that’s your chance to talk about Down Syndrome or genetics or maybe just odd footwear.

Source: https://commons.wikimedia.org/wiki/File:21_trisomy_-_Down_syndrome.png

DS is, of course, not the only syndrome out there caused by a chromosomal abnormality, so why does it get ownership of The Sock as a symbol? And, by the way, wouldn’t it make more sense to wear three socks (for that pesky third chromosome) instead of just two mismatched socks? But then where would you put the third sock? So many questions!

Then, there’s the massive amounts of pressure (inevitably brought on by too many late hours on social media) for Public Declarations. This is it - March 21st - your big chance to convene an all school assembly, print cutesy letters for every student with your child’s adorable face and a message about how she is just like your kids and how “if you have any questions just text my mom”, and bake 400 cookies shaped like socks… or not.

Finally, there’s the box-checking. Let’s get real. That’s what all of these World (insert disease/condition/syndrome here) Days are to most people. On March 21st, we’ll “celebrate” DS, then Autism on April 2nd, and rare diseases the last day of February (oops, you missed that one? Better make a note for next year!) We’ve celebrated it and now we can get on with life in general.

Except here’s the thing - that diagnosis IS our life in general. It’s there every day. In my house, we don’t get to throw a big party on March 21st, then put the Down Syndrome away until next year. Families living with autism don’t forget about it every day except April 2nd.

I understand that these occasions are supposed to bring awareness, reduce stigma, and foster acceptance, but you know what really does that? INCLUSION.

I would give up all the socks in the world (even my precious handknit ones!) if it meant never feeling that knot in my stomach when I take Lucie to a new activity - “Will the other kids be nice to her? Will they be cool about her not following all the rules?...” or the sweaty palms when I see it’s the school ringing me in the middle of the day… or the suddenly dry mouth when the teacher asks if I can meet as soon as possible.

We wouldn’t need any of these special days (or Téléthons or handisport weeks…)if society truly embraced difference, if all people were welcome everywhere in every circumstance. In a way, I would like to just acknowledge that this is France and things are different here and it’s “30 years behind the US” which is what you hear whenever the top of inclusion surfaces. However, that’s not entirely true and we all know it.

Amongst parents of extraordinary children, we like to say the grass isn’t always greener, and we sometimes share news items to that effect - unfair practices happening in other countries around the world. While these things are often shocking enough to draw the media’s attention, there are a million other ordinary, everyday injustices happening in every country of the globe. Kids are being denied attendance in their local school “because our district policy is to provide special education at one particular school.” University students who use wheelchairs have to station in the doorway of the lecture hall “because the building is old and not every room can be rendered accessible.” Perfectly capable adult employees with autism are ostracised because they don’t adhere to the social codes of the workplace. It’s not just France.

So I won’t be inviting you to wear mismatched socks this March 21st. Instead, I invite you to work for inclusion every day. Is your employer inclusive? Ask about that. Are ALL children welcome at the activities your kids do? Find out. Do you notice extraordinary children at school? If not, why? Demand answers. Watch them squirm. When enough people put pressure on enough institutions to do things a certain way, change happens. Make it normal to see more than one kid wearing noise-cancelling headphones at lunch. Make it normal to be served by a young woman with Down Syndrome at a restaurant. Make it normal to work, shop and go to the bank in facilities that are completely accessible. 

Erin Reeser moved to France from the United States many years ago. She is a wife and mother of two children, Lucie and Felix. She works full time in study abroad and dedicates the rest of her time to supporting EKIPP and the families it serves.