Monday, April 16, 2012

Words matter

There is a preferred language guide to talking about Down syndrome. Please check it out and if you're not already complying, please change the way you speak. Thanks.

It might not be (and isn't) a big deal to you, but many of us parents of children with Ds really care.

Our kids are kids first, and that extra chromosome is only a tiny part of them. They're all unique individuals with distinct personalities and life paths. In reality, there is no 'them', there are just children.

No one told Hoda and Kathie Lee on the Today Show though. Ugh. Not even the person they were interviewing who is billing herself as a kind of a spokesperson for the Ds community (although, she certainly does not speak for the Babe). Unfortunately. But she has a book and stuff to flog, so why would she make waves?

Because words matter.

You can't, and definitely shouldn't, always give people 'the benefit of the doubt', or let things slide because you believe that their 'intentions' are good, or that their 'heart is in the right place' (let's face it, often that place is pity, which is not right, or needed). Someone wrote on a Ds forum I read that a nurse actually compared her child to a loyal dog. While I understand that not all people are as explosive as me, that would have sent me through the roof and on one of those verbal rampages I usually reserve for airlines and people not in the position to spit in my coffee (wait staff tends to be safe, that is). Just because the person's intentions are not mean, it doesn't mean that they are not drawing from a damaging stereotype and shouldn't be made aware of this and educated.

Everyone can always use a little more (or better and more correct) education. Myself included. And most definitely a philosopher from Roskilde University who apparently believes that the Danish society's resources should go to 'children who can be the best possible children.'

WTF and OMG combined.

Too bad the Danish society's resources went to educating someone who clearly is not educated enough to know that while he may understand Aristotle, he is sorely lacking as far as defining 'best possible' goes. I'd extend an invitation to him to come and see just how perfect the Babe is, but he's from Roskilde University and having attended said university for a year (before promptly transferring to Copenhagen University for an education), I don't think he'd be open to debate that's not just debate for the sake of debating, and I can imagine why he might have felt he could speak on something he has no knowledge of. On the national radio.

According to him, people with Ds have shorter lives and therefore it's understandable that people choose to not bring a baby with Ds into the world. Really? Is this now the measure of worth? The potential length of one's life? What about those kids who turn into rapists, murderers, and reality stars? Maybe it's just me, but I haven't heard of that many people with Ds who that has happened to, so him only pitting a person's with Ds (or an alcoholic's, cancer-victim's, smoker's, where do we draw the line?) 50 years (very, very antiquated information) against a potential rapist's or anyone's 100 (Really? Everyone who doesn't have Ds lives that long now?) just shows that the issue is a tad - understatement of the year - more complex than how he frames it.

Words matter.

These arbitrary little sounds (or squiggles) we use for the best thing being human has to offer - communication with others. Nuanced interaction. Humor. Affection. Sarcasm. Admiration. Snark. Respect. Disgust. Advocacy. Compassion.

Keeping stereotypes alive and well.

Or tearing the world a new one so that our children (yes, all of them, even the ones with only 46 chromosomes) can exist in it as equals, or at least make their own worth without having nasty generalizations impeding them.

While not many will ever question a verbal rampage of mine when the stereotype is 'negative' (overweight, stubborn, slow) the 'positive' ones (always happy, content, mellow) are just as damaging in my opinion, and those are the ones we ought to kill with kind, educational words.

Because words matter in my child's existence.

My child is just that - my one and only, unique child. A little person with a very much her own thing going on.

My child is not a gift because of an extra chromosome. She is not a blessing because when she was conceived an extra chromosome tagged along.

She is special to the Viking and I because we made her. Intentionally. And then chose to keep her gestating.

She is not 'a Down's baby', and she most certainly is not 'Down syndrome' or 'a Down'.

She has Down syndrome, but she also has orange-y hair, fingernails that chip easily, a cute nose, constipation when she eats too much banana, a good smell, a persisting bald spot where I unwisely hacked off a lock of her hair for her 'This is Me' book, a love for water, an utterly disarming smile, the cutest belly button, and a normal life.

Not typical, but for sure normal. And just frikken perfect for us.

I know. No need to say it twice. I'm frikken PURR-FECT. Yup.

But don't just believe me, I'm just a parent of a cooing-babbling baby, believe adults with disabilities.

People First

Self Advocates Becoming Empowered (look under the statement on the 'R' word)


Now also bloghopping with Jen from Down with Dat:


  1. And whoever said redheads shouldn't wear pink was WRONG. That photo proves it. Gorgeousness.

  2. hola! i just found your blog.
    My name is Alicia, I live in Monterrey, Mexico :) and have two kids with down syndrome, Elias (7) and Eva (4)
    I just added your blog to my blog list and if you want to add me feel free :)

  3. I hear you, loud and clear! I have run into some serious hatred and it is all you can do to keep yourself in check. Words definitely matter. Thanks for participating in the blog hop!


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.