Wednesday, February 6, 2013

It's a regular Halloween here everyday.

Why do people fear Down syndrome?

Why is it scary?

Why is a family "safe" if their child does not have Down syndrome?

Why is having Down syndrome "bad news"?

As I am typing this I look at Babe. She's crawling around, getting to the drawers on the television stand and pulling out DVD covers (she has a good arm on her as far as flinging stuff goes), moving onto the magazine rack and testing out her 6 teeth on the corner of a 5 month old People magazine (I really should clean more), bear crawling it to the staircase and pulling to a stand at the not-so-securely mounted gate (we have no business owning this house), every once in a while glancing at me, smiling, waving, calling out to me and to her surroundings in general.

You know, spooky stuff.

Yeah. I can see why she'd be dangerous, with her stealth crawling speed and unwavering focus that can in no way be upset by oh, I don't know, calling her name or rattling a tube of puffs near her face.

Scary as hell. This little girl of mine.

Oh, it's not her you say? It's the Down syndrome. It's not her, she's not frightening, just that extra chromosome in every single one of her cells. Makes sense. Completely separate from her - that foreign material. Oh wait, it's not foreign, it's the exact same make-up than those other two 21st chromosomes. Not foreign at all. Just more of that cell-y goodness that makes her, well, her.

But babies are not scary. No way, they're cute, that button nose is adorbs, you interject.

Fair enough. Fast forward to her at 19. A young woman, possibly not quite as tall as her Scandinavian (this means quite gigantic in a nice way) parents, very possibly with pale blond hair, and sparkling blue eyes. She'll most likely be pretty loud and like to have the last word (or sound if she isn't verbal) in any situation. I'm betting she'll have a quirky sense of humor (we can see that budding already), and she'll probably still be rocking a pair of frames. She might be into art or music, or, shudder, sports. She'll have friends and a family who think that she's awesome when she's not being a pain in the ass know-it-all (drawing from experience here, people).

Scary now?

Shit! Wouldn't want to meet her in a dark alley.

Now you're just being facetious, you say.

And you're right. And I realize this is not something to be taken lightly.

I know you don't fear my child, but I wish you didn't fear Down syndrome either. It is a part of her. It makes her who she is, Her Babeness can never truly be divorced from her having Down syndrome. I honestly believe that without that extra chromosome she would be a different kid.

I don't love her in spite of her Down syndrome, and I don't love her because of it, I just love her. And I wish everyone else did too.

That's why I get really angry sad when I see an article like this (I'm linking straight to the second page because that's what's really got me in uproar).

Let's make a few things clear here. Down syndrome does not have to be a hurdle unless there is some need for a speed of development that is the species-typical statistically measured average (an empty statistic, for zeussakes). Having Down syndrome does not mean that you will also develop leukemia. There's a greater chance, but that's all that it is. In fact a condition called life comes with the risk of many health conditions, and I hear living, and living well, makes everything even worse. Accomplishments and milestones are not what life is about, at least not for me. For me life is kisses, decadently ripe avocados, a good run, smiling, black coffee, celebrity gossip, humming along to music, sunrises, the smell of rain, a scraped knee, unconditional love, wine, friends, a tiny little puppy, newspaper ink on fingers, and so much more. Anything else would just be silly. Having an intellectual disability does not mean that a person will get abused. In fact, I find it insulting that any of the discussion would focus on those who might get abused instead of those who will abuse. To me a discussion like that is akin to saying that rape is somehow linked to the people who were raped instead of the rapist (as in women who wear short skirts...). And that's more than silly, that's disgusting. Discrimination, judgement, and hatred towards people with Ds are in part fueled by the misconception that people with Ds are somehow different from the 'rest of us' (different is good, it's just that we're all different, not that people with Ds are different together from the 'neurotypicals') or 'inferior' as in not conforming to the species-typical standard of development, of being (read with a dripping sarcastic tone, thanks). Lastly, according to studies, parenting a child with Down syndrome makes a marriage stronger, not weaker, unless you have a crappy attitude about your offspring. A crappy attitude will likely kill a marriage, any marriage, or so I've been told.


I'm glad I've joined a revolution for getting rid of the bad, bad rep Ds has in the world today. Want to help? You can join too. Right here at Down Syndrome Uprising where we're all about highlighting the kind of crap that fuels the fears and responding to it in a (more or less) civilized manner (no restraining orders yet, and I'm kidding, I am*). We want the world to see individuals with Ds as we see them - individuals, equal to everyone else. Not as a separate group to be babied, looked down upon, put on a pedestal (no special angels at DSU), oppressed, stereotyped, marginalized, or referred to as them (you know the tone).

*For later legal purposes

Join the Revolution

So if you're a hard ass like us who won't let crap slide, we'd love to welcome you to the fold (or does that sound like we don't swear, because if it does that's not the way it was intended [pun very much intended]).


  1. Vive la revolution!

    Love this. Just love it.

  2. Hooray! I'm so glad to read your blog!! Thank you for your positivity and love and fierce bad-ass-ness. I feel all these same ways that you describe feeling about your daughter about my 17-month-old daughter Pearl, who has Down syndrome and who is so very smart, surprising, inventive, hilarious, etc. etc.etc. I don't understand these attitudes everyone seems to have, including many other parents of kids with D.s., that it's such a disappointment, or that "God chooses special parents" for a kid like mine, or that people like Pearl are "special angels," or...any of that. Although I *am* very grateful to Pearl for helping me face a few prejudices I didn't realize I had until she blazed into my life and turned all my ideas about intelligence and disability on their head. Now I sing her this song that goes, "Not everybody has to be the fuckin same...not everybody has to be the fuckin same...NOT EVERYBODY HAS TO BE THE FUCKIN SAME!" She laughs and claps when I sing it to her, though she's probably thinking "Well, duh, Mama."

  3. Awesome! Love your take on the "scary" stuff. :-)

  4. Carry on Mama. I feel like a proud Mama myself passing the torch. She gets it she really gets it ( Sally Field reference )

  5. "I don't love her in spite of her Down syndrome, and I don't love her because of it, I just love her. And I wish everyone else did too."

    Yeah, that's it.

  6. yes, yes, yes and YES! You had me at avocado.


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.