Williams Syndrome Wednesday: To the best-selling author who robbed me of the ending

by , on
Oct 8, 2015

mommydo.comI used to be a big time reader, but these days, I’m often too busy to laze around devouring books like I used to.

I have work and family responsibilities including caring and advocating for my daughter who happens to have an intellectual disability. Getting to sit down and read an entire book is a luxury I can rarely afford.

Lucky for me, I was recently sent on a business trip. On a plane. Away from home. No inflight movie for me. I was thrilled to be able to dive into your the latest book (I’m a huge fan). I had no idea what it was about. I grabbed it and off I went.

It turns out I was hooked from page 1. The woman who had grown up with a heart condition? The parallel story of a mixed-race guy who growing up in the eighties? The emotional basketcase mom who carries the scars of raising a child with a medical condition that kept the mom on high alert from a touchy birth through numerous scares? So good. I really felt for her in particular. You captured what that feels like so honestly, and beautifully. I was moved to tears. Imagine my good fortune, I thought, in choosing a book that made me feel ‘seen’, understood and not alone. I was struck by the truth that was flowing off the page.

And then, not much further along, I was stuck again. And not in a good way.

In the midst of a conversation between the main female character and a friend in their teens, the one girl drops the R-word and the other girl responds with the same word. It was like a sneak attack in what felt like a ‘safe place’. Retarded. It pains me to type it out. Such an ugly word.

I was caught by surprise (just as I am when I hear the word in casual conversation). It came out of nowhere. It wasn’t like the book was full of language the pushes societal bounds. Twice you chose to write “the n-word” rather than spelling that one out. Why was the R-word so easy?

In a bizarre coincidence, as I closed the book, angry that you didn’t take the time to find another word, a beautiful little boy who happened to have down syndrome came bounding down the aisle past my seat.

That little guy deserved better, favourite writer lady. My daughter deserved better. I deserved better. There are more than a million words in the English language. Choosing to use the R-word is not just lazy on your part, it’s also irresponsible. Millions of people read your books. When you use the word, it tells all of them it’s ok to say it, read it, print it. It’s clear you don’t think “the n-word” is ok. How is this different? I know, it’s just a word, you have artistic license blah, blah, blah. But the thing is, it’s not just a word. Not to individuals with intellectual disabilities and parents and family members like me who advocate tirelessly for inclusion and acceptance. It represents prejudice, discrimination and its continued use makes an entire group of people seem “less than” in society.

I expected more than that from you – a writer. A mom. And now I don’t know what happens because I couldn’t bring myself to finish the book. If you happen to see this letter, I’d love to hear your thoughts on the matter.

Oh, and I’d like my money back.

Here, of all places, watch your mouth.

by , on
Nov 8, 2013

That’s what I felt to today while at developmental play group.

Every week Obi and I participate in a play group that integrates typical kids with those who are experiencing developmental delays. Some are preemies who are just a little behind. Others, like Obi have a diagnosis. And the rest are just typical kids who come to take advantage of the program which includes free play, social snack time, gym time and music all in one fab morning a week.

The group takes place in a specially designed room for the 0-2 set in a building that houses an integrated preschool. It also caters to both typical kids and those with physical disabilities and/or developmental disabilities.

I think of this place as a ‘safe’ zone – where Obi is just one of the gang.

Today, there were 2 incidents that ticked me off.

The first was during snack time when a mom, who was having trouble opening a sippy cup, said “I’m so handicapped sometimes.” REALLY? Who says that? And who says that HERE? Geez, bad choice of words. Bad company to use them in. Just bad.

Then, not 45 min later, another Mom, in the room with just me and the mom who earlier made the remark above, used the R-Word. Yep. In the one place that accepts kids with all levels of ability. In front of one of the Moms known to have a baby with a diagnosis (ME) that would fall under the umbrella of that word back in the day.

THE R-WORD?

I couldn’t let that one go. I said “I’m sorry, you just can’t use that word anymore. It’s not acceptable.”

She sort of looked at me like I was the word police and the other mom asked “what word? Did she say something bad?”

“Yes.” I said. “Retarded.” (I kind of threw up a bit in my mouth as I said it outloud) “It’s not an appropriate word to use, especially around people like my daughter”.

Well, she launched into an apology that might as well have come with a shovel to help her dig herself further into the hole she was creating as she spoke.

There was “I know I have to stop saying it.” “I just can’t help myself.” And, “When I say it at home I have to tell my son it’s a bad word and he shouldn’t use it.”

OK – I get that it’s been a part of the vernacular for quite some time and habits are hard to break. But to use that word enough that you need to warn your child not to repeat it just isn’t cool. NOT COOL Mama.

Especially not cool in that place. ESPECIALLY. What if some of the preschool kids in the next room heard you? What if a parent of a child with a developmental delay heard you?

Oh wait. They did. I DID.

And now I really don’t like you.

I’m pretty johnny-come-lately on the mission to take the R-word out of conversation but there is a whole movement.

In case you’d like to read more about what people are doing and why you too should never, ever use the R-word again, visit Spread the word to end the Word.

And, if you do feel compelled to drop the R-word, be sure not to do so at a babygroup/school for kids with developmental disabilities. Or in front of me.

The day I realized I will never be the same.

by , on
Oct 1, 2013

Things happen in life that change you. And you don’t really notice the affect until one day when you find you’re just not the same person you were before.

Today was that day for me. Oh, and it REALLY pissed me off.

Let me explain. It’s fitting that this epiphany happened at Starbucks. I’m a big fan. Mmm, grande awake tea. Anyway, earlier today I headed to ‘bucks, girl in the buggy, trying to get her to nap.

Mommydo Life changed_Starbucks

As I was passing through the door, a guy was coming out. He held the door for me and, over my head, finished his conversation with the pair behind the counter. He said “I don’t care who you are. If you have one eye that points this way, and one eye that points that way (complete with hand gestures) that’s CRACK!” and headed out the door.

Old me wouldn’t have thought twice about that remark. But the me I have apparently become was REALLY F%#$ing mad. You see, little miss is currently being followed for potential strabismus (the condition when the eyes don’t look the same way). Not CRACK. A genetic condition. A little something that makes her a little different from everyone else…

and I’m pretty sure whoever he was talking about? Also, NOT CRACK.

I walked up to the counter and before ordering told the Barista that I was very offended by the remarks I caught at the end of their conversation. But the guy was gone. Just some guy. No big deal.

Then, he returned and headed into the back. HE WORKS THERE. Mr. Totally Offended Me works at my fav Starbucks. The Starbucks I go out of my way to frequent because I love that they have an employee with Down’s Syndrome. It’s usually one of the highlights of my day!

By this time a whole bunch of customers had joined the line and I didn’t want to drag all of them into my feud so I left.

Not 5 steps out of the store I realized I was actually really, very angry. This little twerp needs a little reminder that, as an employee, he’s an ambassador of the store and the brand. He shouldn’t be bellowing  about a disabled person (customer?) over the heads of other customers. Bad choice. Bad character. Just bad.

And now I need to call the store and talk to the manager and let them know about my experience and speak up. ‘Cause they need to have a little sit down with their staff.

That’s who I am now. Someone who gets mad. Who speaks up. Me – formerly, self absorbed, egotistical, make-a-joke-at-others-expense, foot in the mouth – me.

I’m pretty sure this new (angry) me is not going to change the world. But I can change how many careless remarks are made at my local coffee shop. Or maybe I can’t.

But I don’t have a choice. I gotta try. Cause some day it’ll be my daughter that twerpy jackass is talking about.

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