Friday, March 21, 2014


Today is World Down Syndrome Day.

Today is not about creating or spreading awareness (FYI, not really about awareness, like, ever, yo), not even really about acceptance (although every single day should be about active acceptance, so there's that. Heh).

Today is about celebration, about pride, about culture, about rights.

About the kind of celebration of difference that doesn't try to see past or beyond the disability by ignoring it completely or by only searching for similarities, but the kind that views it as an accepted part, sometimes a defining one if the disabled person so chooses herself, of a person. The kind of celebration  that acknowledges and respects a disability, like it acknowledges and respects someone's race, sexual orientation, and chosen gender. The kind of celebration that embraces how a person chooses to define herself.

A celebration of taking PRIDE in one's self. All of one's self.

Today is not about how regular we all are - and we are, most of us anyway, I and my daughter included - but about enjoying life, and having access to learning and community. What these self advocates speak of in this clip:

Today is about access to healthcare and not having one's health concerns brushed aside with "We often see this in Down syndrome." What this clip speaks of:

Today is not about my kid being the best advocate for acceptance, meaningful inclusion, and equality for people with Down syndrome just by living her life or some such esoteric babble (Another FYI, it never is, she's not your campaign until, if ever, she wants to be), or about us as "a family affected by Down syndrome" (Yup, you guessed it: never is), or how our life looks or is, or, deep sigh, about "advertising" for Down syndrome to stall abortions or something, another deep sigh. Nope.

Today, or any day really but you know what I mean, is about recognizing, talking about, accepting, celebrating, and accommodating for Down syndrome. Today is about people with Down syndrome.

"I have Down syndrome, and I am proud of who I am," say the self advocates on the first clip. Not a single eyebrow should be raised, not a single scoff heard. This should not be, and isn't, a radical idea.

I want my daughter to be able to say "I'm proud to have Down syndrome."

That's what World Down Syndrome Day is about.

Mother Nature thinks so too and gives Down syndrome two thumbs up:

One final thought, because it's eating me up. The same one I had last year also so maybe I should scream it today?

WHAT DO FUNKY SOCKS HAVE TO DO WITH DOWN SYNDROME? WHAT? WHAT IN THE...? WHY...? Can we have a reasonable explanation, and can someone reassure me that regardless of all evidence, associating strange socks with Down syndrome isn't counterproductive to acceptance after all, please? And why does supporting this absolute incongruence seem to cost money? Anyone? No, really, ANYONE?

Thought so.

I'll see your socks and raise you pride. For free. How's that for a good start to a celebration?


  1. We wore socks FOR FUN :) and all the kids in his class wore socks that represented them, or they picked out, or decorated themselves. The kids in his class - you know - the general education class he's in :) Where he is accepted and loved for who he is - and they don't give a flip about his extra chromosome - and they're learning - to celebrate everyone for who they are - and love them for who they are. And - I think that being the only class in the school wearing fun socks and celebrating today, also gave them a chance to talk about down syndrome and what it is and what it isn't. And - to me - that just adds about 27 more advocates for acceptance in the world and about 27 more kids who will grow up to view people with DS as just one of them - you know - just regular ol' people :) Which, we all know they are - but I think sometimes society doesn't see that - but - those goofy socks - which have NOTHING to do with DS or awareness or anything really - we definitely uniting and celebratory today :) I get where you are coming from though, and love your thoughts :)

    We've never done socks before - but for us - this year - it made for a super fun day at school :)

  2. This. All of this. Love this post hard. We need more PRIDE. xox

  3. I don't get why you don't like the "Dear future mom" video... I think it shows pride...


The Viking came home from a business trip packing a pink castle, a whole heap of princess and prince dollies and a carriage pulled by a unicorn. Life's good until someone swallows a crown or a glass slipper. I won't ever answer your comment, but I'll sure appreciate it while I'm sifting through shit looking for that crown. Yah.