Monday, October 5, 2009

What is it with the "R" word anyway?

Some of you may have noticed the button on the side of my blog: Spread the Word to End the Word! I would guess a lot of my blog readers have used the "R" word in their lives. I myself am guilty of carelessly tossing it around. After Miss Banana's diagnosis though, Dr. Corn and I immediately stopped using it. It was suddenly way to personal to just say without thinking when we didn't like something. Not too long after we got the amnio results back, we went to a party. I was talking with one of my friends, who had no idea about Miss B (she probably didn't even know I was pregnant yet!) and she started telling a story and she used the "R" word too many times to count. Each time she used it, it felt like a slap in the face. Over and over and over. I could feel the blood draining out of my face as I was struggling to lick the wound that she didn't even know she had caused. At some point, she must have realized that I didn't think her story was as funny as she did and blessedly the conversation changed. I spent the rest of the evening feeling raw, vulnerable, and like a failure. Why hadn't I been able to stick up for my unborn child? I don't know. The paradigm change was probably still too fresh to totally process and feel comfortable enough to say something without breaking down into uncontrollable sobs. Since then, there have been other times that I have heard the word said by friends or family members and I haven't said anything about it. But, today, that changes. If Miss B can handle open heart surgery at 2 1/2 months, surely I can speak up and ask people to use a different word to make the world a better place for her.

Nancy, from the BabyCenter message board, is one of those Down syndrome mommas that has been there, done that and always knows what to say and how to say it. I hope I can be the kind of wonderful advocate that she is! Anyway, Nancy shared this letter with her family and friends about the "R" word, and has given me permission to post it here. Her story could be my story--just insert "Miss Banana" instead of "Gabriella".

From Nancy:
Dear Family and Friends:

I write to you about the "R"word--retarded. It is a word used in a clinical setting to describe intellectual disability. As you know, Gabby has Down syndrome, and although she is currently described as developmentally delayed, she may eventually be classified as "mentally retarded" or perhaps another phrasing slowly being used more, such as "intellectually disabled" or "cognitively impaired" or something else.

As you all know, the "R" word is also commonly used in slang by many, including myself at one time. I certainly never took its use seriously, never connected it with the people I knew with Down syndrome, never gave it a second thought, using it as commonly as "weird" or "rediculous". But when I was pregnant with Gabby, Vincent said, "We have got to stop using that word." I said, "I know." and we tried and succeeded. But I took it as being politically correct, working for "our team", towing the party line. I did not take the impact seriously.

I take it seriously now. Two years ago, I was at Samantha's softball game. The sun was shining, the birds were signing, all was right with the world. Gabby and I sat on a blanket with some toys. "What a beautiful baby!" a woman commented. "Thank you!" I said. I beamed. A few minutes later, this woman's daughter started to go back to the field. Her mom stopped her, adjusting her hat and said, "You can't go out like that. You look retarded!" With one word, I felt like someone had stabbed me in the stomach. She might as well have said, "You look so Gabriella!" I spent the rest of the game holding back tears. I also felt like a failure for not saying something, not sticking up for my child.

I've had some discussions with people about this. Some have been understanding. Other have thought of me as being picky, sensitive, PC, or misunderstanding their motivations. ("It's not meant to reference Gabriella!") I know it's hard to understand without being on this end of it--I know. It took me awhile to be fully impacted! But I thought today I'd share someone else's take on the "R" word. Please read it, and as you do, please understand that if you throw the "R" word around, your children will think it's OK. And they'll use it, without any awareness of its impact. These are the same kids Gabby (as well as Samantha, Maria, and Elena) (and I would add Miss Banana, T-Man, and Fearless) will see at parties and other events, and it will only be a matter of time before they hear your kids using that word. Please, please read below one's girls experience and know this could be Gabby (or Miss Banana) one day. And I hope you will agree to help eradicate that word, even if it's just in this circle of people.

Thanks a lot! Love you all, and I hope no one is upset by this--please understand a momma bear need to protect my little girl.

Here's the link to the story:

That Word, This Girl

2 comments:

Cathy said...

Thanks for stopping by my blog. Great post...and Nancy says it "just right". It's been easier for me to talk to family members and friends about it. I haven't approached a stranger yet. We are going to have to work to make it as politically incorrect (and just plain WRONG) as the "n" word and other words.

As for your Hip Helper question...I bought Lily's first two pairs on www.hiphelpers.com. They are $15 a pair...if I remember right. It's not overly expensive, but having a mom who is a professional seamstress, I know that they could be made VERY inexpensively.

Wendy P said...

Thank you for your comment on my blog! Your kids are adorable!

The r word is such a hard thing. It sneaks up on you when you least expect it. My knee-jerk response now is, "You're going to have a pick a different word." I usually get an immediate apology and rarely have to explain any further.

(love your playlist, btw!)

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