Our experiences with Williams Syndrome, a rare genetic disorder.
Tuesday, March 31, 2009
Spread the Word to End the Word
Be the change you want to see in the world.
-- Mahatma Gandhi
Today is Special Olympics' "Spread the Word to End the Word" day. They are collecting pledges on their website from people who vow not to use the word "retard" in a demeaning, hurtful way.
If you haven't heard Soeren Palumbo's speech honoring his younger sister Olivia, today is the day to listen to it.
I just saw the advertisement for novelty IQ tests on Facebook I had an issue with 10 days ago. It no longer says "(4) of your friends are RETARDS!" It now says, "(4) of your friends are IDIOTS!" By the way, I never got a response to the e-mail I sent.
Is it tasteless? Yes. Can I live with it? Hell, yes.
Coincidence? Maybe. I'll keep my eyes open.
In any case, I plan to keep on SHOUTING. Thanks for the inspiration, ladies.
To an internet company who is advertising IQ tests for entertainment purposes.
To Whom it May Concern:
I just spotted your link on my Facebook page that read, "4 of your friends are RETARDED."
I am thankful most people are not parents of someone who is developmentally disabled. Not because they are not a complete joy to be around but because the road is difficult, and it does not help that the world makes it very clear that they do not fit in. One of the ways this is apparent is the rampant use of the word "retarded" (slang). In fact, I would consider this bordering on hate speech. It is not acceptable anymore to use this word (even the medical field is dropping it), and many of my friends on Facebook who see these links have children who would have been considered classically "retarded." We find this offensive. Period.
My son was born with a genetic birth defect, and I was told that he would be "retarded." It was like a punch in the stomach. Put yourself in my shoes. How would you feel if you found your child was the butt of jokes? No matter what your age, it is no longer appropriate to use this word. Period.
I challenge you to change your thinking and improve your public image by removing this word from your links that pop up on sites like Facebook. If you do, I will sing your praises to EVERYONE who will listen. My friends are already spreading the word. And we have very LOUD voices. Please forward this to the appropriate parties.
Very sincerely,
The mother of a developmentally disabled child who does not think the R word is funny
I always wondered what would happen the first time someone called my kid a retard.
The movie Tropic Thunder stirred up a great deal of controversy because of the inappropriate and ridiculously excessive use of the slang form of the word retard. While I agree that this was an incredibly irresponsible, thoughtless decision on the part of the movie makers, I felt nothing more than numbness when I looked up exactly what was said in the film to measure my own reaction. I simply decided that I wouldn't find it funny and didn't buy a ticket. While I admire those who express their outrage about this movie, I didn't find I had much fire in my belly about it at all. If I felt anything at all, it was sadness and disappointment.
I have a long, strange relationship with the word. I likely heard it tossed around casually on the playground and perhaps used it myself, although I cannot remember with certainty. I learned the word "retarder" in high school French class, and I never really thought about anything but its root and correct usage. I just knew it meant "to slow." I can even conjugate it for you.
Later on in my life, the word and its medical meaning seemed to easily tumble out of our geneticist's mouth when Erik received his diagnosis. We were told that although our child would have strengths, he would be retarded. Slow. He explained the levels of what he kept calling "retardation" and where Erik would possibly be compared to other syndromes. It was a complete slap in the face for a fairly new parent who thought Erik's strange difficulties would fade with age, and perhaps the numbness began to set in back then. The word still echoes in my skull, even after all that time. Since then I have wondered when someone would use that word outside of a clinical setting to refer to Erik. I have secretly dreaded that day.
Recently I received an e-mail indicating that someone had left a comment on one of my You Tube videos. For the first time since November 6, 2006, the day I opened my account, I saw an ugly, negative comment underneath my favorite video. The one of Erik eating lunch.
It finally happened.
However, it did not happen the way I imagined. Not even close. There was no insult hurled at Erik on the playground. Instead, the word was quietly injected once again into my life on line.
Anonymously.
In addition, it wasn't even the "R word." In fact, I had no earthly idea what the word in front of me on my screen meant at all. I actually had to look it up.
WATERHEAD.
According to urbandictationary.com, this word means: A person with mental health problems, i.e. Down syndrome; or retard for the lay person.
The examples listed were: Hey why do all the water heads work at McDonald's; Someone stop this water head from humping my leg; That effing water head just pooped his pants.
Nice.
I stared at the word and the horrible examples on the screen. Although I admit that I felt a wave of nausea wash over me for a split second, I didn't cry. I absorbed the word, got up from my computer, and went on with my day, feeling a tug on my heart now and then. In the coming days, I thought about it from time to time and shared my feelings with a couple people close to me. Did it hurt? Yes.
Did the world end?
No.
To the jerk that left the comment: Thank you from the bottom of my heart. Although you have been blocked from my account and your comment has been deleted, the first time for me is over and done. I never again have to wonder when that horrible moment will come. If the word or one like it does come floating through the air from someone on a playground or in a mall, I will be that much more prepared. I feel as if I survived some sort of strange initiation and expect that although things may be more personal and more difficult next time, I am certain that I can and will survive. I'm not the sobbing heap of mother that left the children's hospital with her baby wearing a new, ugly label that rainy day two and one-half years ago.
Words are just words. But words hurt. They do. I have attempted to remove the ugly ones from my own aging dictionary of slang and encourage others to do the same. I don't want to give them any more power than they already have. And I have as many or more powerful words in my arsenal to counteract the nasty ones, attempt to make a small difference on this planet, and soothe the hurt that comes with the ugly as my son is exposed to more of this world. The good. The bad. And the very ugly.
And I know that no matter what happens, my world will not end.
Last night I attended a very casual fashion show downtown at one of our fairly classy local martini bars with one of my best friends and about six women from my old place of employment, none of whom I really knew. I sat on a velvety couch with them around a metal lamp shaped like a martini, complete with a plastic green olive as big as my head and a glowing pimento, atop a glass-covered, claw-foot bathtub for a table. I ordered some New Zealand sauvignon blanc and was just beginning to enjoy its gentle bite on my tongue when the intelligence level of our party became painfully apparent.
The young woman to my left looked out the window at her friend sitting outside at a metal bistro table and began commenting on her attire--a cute, more formal tank top situation with pink, white, and black blocks of color and a chunky necklace of large, white beads that reminded me a bit of something Wilma Flintstone would wear. As I looked around at the 20-something set, most of the girls were wearing accessories like this in various colors.
"Ohmigod! Just LOOK at her! She looks like a clown! When she wore that outfit when we went to Vegas, I told her to get out of way when I took a fucking picture! She looks like SUCH a RETARD! I mean, that outfit is just so RETARDED! I would never wear that because I would look like a RETARD!"
She used that horrible word at least three times in rapid succession, and I winced each time she said it with gusto. I kept my lips firmly pressed together unless I was allowing a trickle of wine to flow between them. I also glanced at the ceiling for the hidden camera.
Nope, no Allen Funt.
I began to think to myself that perhaps my lovely, slightly tart white wine wasn't a good choice. Perhaps I should have chosen gin after all. My mood began to cloud with swirls of surliness. This was a great reminder about why my friends are either from years ago or male with very few exceptions. The cell phone belonging to the male friend I attended the event with began humming away with catty text messages apparently regarding my presence from the young lady sitting across from me. My patience was now in extremely short supply. Thankfully, I was not bored. The model familiar with our group became progressively more intoxicated and amusingly unstable in her wedge heels with each outfit she showcased, seemingly unable to resist the call of the complimentary lemon drops from the bar, and she began touching me excessively, shaking her Davis Brand jeans-upholstered posterior in my face. I glanced at her expensive backside, smiled politely at her when she looked back over her shoulder, and ordered an additional glass of wine.
Normally I think the world is completely off its rocker in terms of being "politically correct," but I have genuine difficulty understanding why we use slang words and expressions in casual conversation that began as cruel slams against others, even as adults. I admit that I have done it in the past without thinking. These words are so watered down from overuse that the people who use them fail to see any harm in them. However, they do inflict pain on some who are listening. You will not see me visibly flinch when someone casually uses the word "retarded" in conversation with me, which happens at least once a week, but on the inside I feel the sting and tend to hear nothing that person says for probably a full 20 seconds afterwards. It sounds ugly to me and disrupts my train of thought, requiring me to unclench my teeth and pull myself back together. I can't help but imagine how my son will feel someday when he becomes aware of his differences and hears that word coming from people who love him. How confusing would that be?
I have removed the "R" word and many other words like it from my vocabulary unless they are used in the appropriate context. I hope you will do the same. It's not easy, as they are so ingrained in our dialogue, but I believe it is worth the effort.
Married to Brian in 2001. Our son, Erik, was born in October 2004. Erik was diagnosed with Williams syndrome by a geneticist in March 2006 at 17 months of age. The diagnosis was confirmed by FISH testing a few weeks later.
