Saturday, March 29, 2008

Why it hurts

Tonight I have been surfing the net and checking up on some of my friends from myspace. If you're one of those friends, please know that I finally took down my Christmas music! I'm worse than those people who leave their lights up until June! haha

Anyway, I was browsing through some pictures on a friend's page who is from our church in California (and is involved in leadership there). I saw a picture that literally knocked the wind out of me. I felt sick. Light-headed. And then I felt angry. And now I'm sad.

I thought about posting this picture here so you all could be livid with me, but really, I don't want to give any more credit to the person who created it. (I'm almost positive it was not made by the friend who has this on his page.) Let's just say, it's sick, cruel, disgusting, degrading, and it involves the word "Retard" and a picture of a child with Down syndrome. I can almost hear all of you parents in the Down syndrome community groaning.

A couple years ago, Downsyn, one of the message boards I post on, was hacked into. Pictures of many of the children from the board, including Kennedy's, were stolen. The hackers wrote horrible things on the pictures and reposted them for all to see. Our administrator, Tom, took immediate action to get them removed from the net. Still, our hearts were shattered and our group was shook to the core.

For those of you reading who are NOT part of the Down syndrome community, let's talk about this for a minute, please bear with me. The "R" word is something that some of you might use... you may use it to describe yourself when you do something dumb. "I'm so 'R'." You may use it when you think something that happened was dumb. "Man, that was 'R'." Chances are, if you use it, you've been saying it since childhood and you'll say that you don't mean anything by it. You'll say that you're just joking around. You'll say that it has nothing to do with our kids. "Everyone" says it, right?

So here's the thing. Kids with Down syndrome, in most cases, have mild to moderate mental retardation. It's a medical diagnosis that few avoid. When Kennedy was born, that word made me want to puke. I didn't want to think about it, I didn't want to speak about it and I definitely didn't want anyone else thinking it when they looked at my baby. Even when used in the correct context, I don't think it's ever easy to hear that word in relation to one of your children. Still, it's part of our reality. (Even though we happen to think that Kennedy is one of the 4 most brilliant kids on the planet. ;o)) Darn those IEPs!

SO when we (parents of kids with Down syndrome or other cognitive delays) hear the "R" word being thrown around, used flippantly as a joke, even knowing that the offender most likely doesn't MEAN to be cruel, it hurts us. It hurts badly. And many times we don't say anything because we don't want to risk offending the offender.

I have to say, I have gotten a little more gutsy over the years, but in many cases I'm still chicken. There's a nurse at Vanderbilt that I STILL wish I would have said something to... but there's also the pediatrician I fired because of it (and other issues). I've had conversations with several friends about it, and just a couple days ago my husband talked to his Soldiers in Afghanistan about it. It's THAT important.

The "R" word will NOT be used in our household as a way of degrading oneself or someone else. We are educating our children now, in hopes that they will educate their friends... so many kids today STILL use this word in the wrong way. Kids who will one day go to school with Kennedy are hearing it right now from their parents. They're passing down prejudice, whether they mean to or not. This friend in California is showing that it's ok to make fun of people with Down syndrome... whether he realizes it or not. And it's NOT ok. It's just not.

I hope that what I've said makes sense... it's after midnight and I'm tired and still a little frazzled. I hope that just maybe one person reading this will be touched by this post and realize that I write, not to accuse or condemn, but to educate. I hope that maybe one person who reads this will talk to their children today about this word... and tell them to talk to their friends. I hope that one day Kennedy will be proud of me for helping her, and all kids like her, to be more accepted in today's world.

There are quite a few blogs out in blogland that have addressed this issue in the past week. As hard as it is for us to hear, it's even harder to write about. But as advocates for our kids, we HAVE to stand up for them. We HAVE to be their voice. If we don't do it... who will?

34 comments :

Lynn said...

Made perfect sense to me...just breaks my heart that you had/have to deal with this garbage.......

~Melissa~ said...

Well put!

Debbie said...

I still want to puke whenever I see the label "mentally retarded" associated with my girl. I know that's our reality because she is delayed, but I wish we could get to a more appropriate way of documenting that. Reading Developmentally Delayed doesn't affect me in the same way, so I know it's the R word that cuts me to the core.

Burgh Baby's Mom said...

I don't know that there is EVER an appropriate time to use that word. Anybody who does is just lacking creativity and conscious.

mom2natnkatncj said...

Oh Renee, I'm so sorry you had to see something like that. I'm even more sorry that there are such ignorant people out there. It's such a shame. Good for you for sticking up for what you believe in though and for Kennedy. I don't even think I've ever heard my kids use the "R" word before, but I'll be sure to put an end to it if I ever do hear it.

Melanie said...

This is the first time I am hearing about the picture incident on downsyn. It makes me sick to be reminded that there are people in this world who would do something like that. I am sorry you had to be reminded of those horrible people. Remember, our kids are SO valueable to the world and us of course! I hope you don't come across something like that or the R word ever again.

Anonymous said...

I'm guessing you are talking about the "Fighting on the internet is like running in the special olympics" image. It's been around for quite a while but it doesn't get any easier to see it.

My daughter is 5 years old. When she was born one of my friends was rather supportive while others were not. Less than two weeks after she was born my "supportive" friend posted this picture on her website. She prefaced it with something about how it wasn't meant to be offensive to anyone specifically.

She didn't get it, that of course it was offensive. We don't talk anymore.

I hope that you told this friend what you thought of his picture. I wish I had the experience later on when I could have verablized it better.

Good for you for standing up for the kids.

Mommy to those Special Ks said...

Actually, while I HAVE seen the picture you are talking about, this one is SO SO much worse... if you'd like to email me, I can send it to you.
It's so hard when "friends" can't understand how this hurts. I'm sorry you had to encounter it as well.

Jennifer said...

So well put! I've struggled with this myself. At Gavin's eval at TN School for the Blind this past summer they told us that due to his brain damage he would never cognitively be "a normal blind child"; that he would be, using the term the school system uses, termed mentally retarded at age ten. Apparently they can only technically use "developmentally delayed" until 10. Anyway, I find myself being very aware about jokes referring to the short bus and people using the word retarded in a negative way. I does sting because our kids already have so much to overcome. I wish the world around them was more focused on encouragement and support rather than judgement and prejudice. But, you're doing the right thing which is to try and educate others about how to not use this word and how to respect people who may be different. I applaud you.

Debbie Yost said...

Wow, it's been some week for this fight. Just today I received information that a mother on Cafe Mom posted a bunch of these offensive pictures on her group. I contacted Cafe Mom to get it pulled and contacted our local guild to help. Maybe we need to contact My Space. I don't know much about My Space so I'm not sure if it's possible or how to go about it.

The only good I have found out of this issue recently is all the support I have received and seen by not only those with children with special needs but people who just get it and support our cause. Thank you for taking the time to write such an informative post. Sadly, we have to keep fighting this fight. Maybe someday we will win.

Laura said...

Wow! There must be someting in the spring air...we have had a tough week, too. I have been on my soap box this week about the R word and those who use it. Today was the straw that broke the camels back...I'm going to post about it today! After 9 years you think it's going to get easier well...Not always! I'm sooo sorry you've been hurt, I'm praying for you!

Heather said...

You spoke for all of us and especially our children and for that we thank you. This conversation goes on weekly in our house and our older children do speak up to their friends and others when it is used. A friend of mine who's daughter had a bridal shower, posted a picture on her myspace, of herself that she did not like, with the caption,"I have Down syndrome". I was livid and called my friend, she hasn't called since. At my 16 year olds school it has gone to a new level. Some kids instead of saying the "R" word have started to say "I'm so D.S." Can you believe that. How are this kids raised because even before Zoey was born that word was known as a" bad" word in our home. The same went when I was growing up. Sorry to go on and on. I get so worked up. I once had a woman walk up to me and say "Your daughter is so cute, is she "R" or something." I was absolutely speechless. This world is filled with all kinds. Thank you again because it is again an example of continuing to be a voice for all of the children out there.








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Kacey Bode said...

Ugh. I hate the "R" word, both medically and of course when used incorrectly by others. Thank you for posting about it and thank you for not posting the picture, I don't think I could deal with it right now!

Shari said...

I, too, hate the "R" word. I have taught myself and my kids never to use it because our youngest son was diagnosed with "mild retardation". But, because of the things he can't understand, he's now in a facility to help mold his behavior because he's beyond our help. We will learn the tools to help him once he gets home, but him being gone is heartbreaking. Thank you for posting this. It did bring tears to my eyes. And, it hurts this Mama to know that even a friend might use it to describe something, even if they don't mean it. Sorry for rambling. Shari

WendyK said...

Very well said! We were not allowed to use that word in our as kids or any other word that would make fun of anyone, but I had friends who did and even as a person with no diagnosed issues it is hard to hear.

If those who choose to see kiddos with DS that way, they should just spend 10 minutes with them. Those with DS are the most loving affectionate people I know (ok, I only know 3 with DS, but still they are all like that). They can make anyone's day a little brighter no matter what the struggle of the day may be. The innocence is intriguing. Kennedy is a beautiful little girl and you can see her beautiful spirit in her eyes even in pictures.

Intelligence is relative, and we are all beautiful and special in our own way!

OHmommy said...

Amen, girlfriend.

I can't believe that someone would do that.

momof4as said...

I just can't imagine what people are thinking when they do something like that. Plainly, they're not thinking at all... the "r-word" was never allowed in my house growing up, and I would not tolerate it from my kids either (I don't think they know it to be honest, they're really young). I have heard a couple people I know use it (younger than me - in their 20's though) and it made me uncomfortable but I didn't say anything. If there is a next time... I will say something.

Sarah said...

What an amazing, eloquently written post! I wish this post could be seen in a very public forum (even more so than blog land!) so others can get a taste of how this feels.

Although I am not a parent, as a therapist who has worked with special needs kids for years, this word makes me cringe...BEYOND cringe! And it sickens me how jokes, sitcoms, just SO many things in society seem to think it is okay to make light of the situation! We are so politically correct when it comes to race and gender, two things that do NOT qualify as "special needs", because nobody would dare dream to offend anyone, yet we think it's okay to make fun of a truly special needs person by tossing this word around?!?! Makes me ill.

Thank you for sharing this. You are a wonderful advocate, not just for your child, but for MANY!

Kristen said...

I feel like standing up here in my office and applauding. Well said perfection.

Take My Life... said...

Renee,
First , look at this!! I have a blogspot,woohoo!!!
Second , I will share this will my children and make them all commit to never ever say the R word...
Love you lady!!!
Mimi

Rebecca said...

I can't believe somebody could be that heartless to hack into that site the way they did. So, so sad. Good post.

Kim said...

Beautifully written!! I would love permission to link back to this if I may? I have had recent issues with this word as well :( Brava to you.

Peace be with you
Kim and Miss T

Mommy to those Special Ks said...

Yes, feel free to link back! I would be honored!

Lisa said...

Wow! Thank you for writing this. I guess I had never thought about it that way....the way we use the "R" word in a flip way. I will never do it again, and I will teach my son about it. P.S. I would never use the word in a hurtful way to someone, but I have used it to describe myself (you know...) BUT, I won't anymore....thank you for opeing my eyes to this.

Lisa

Carey said...

oh my gosh, i just can't stand it! i'm guessing you read our run in with the word from last week. ugh!!! i'm so sorry you had to see that. you stated your point very well, i couldn't have said it better. i totally agree, it is hard to say things to some people, i don't know why we chicken out, i'm working on that!

minkywink said...

Very well written Renee! I had the same experience a few years ago when I looked at my 20 year old nephew's MySpace page. He had the S.O. picture and saying there and I was aghast! He apparently didn't think about the disconnect between the little cousin he loves dearly to this (what I'm calling) "immature" display for his friends to see. Needless to say, once it was brought to his attention, he changed it immediately, along with (hopefully) his outlook. His many cousins heard about it, too, and I think they all learned a valuable lesson. Hopefully it wasn't just that Aunt Colleen is crazy, just crazy about her daughter!

Have you heard about a speech given last year by a high school senior named Soeren Palumbo? You can do a search on YouTube with his name to see the video. It is excellent and one that I passed on to family (including nieces & nephews), friends, professionals and school personnel.

HannahJ said...

Can you let me know where it appeared on Myspace? I have a good contact there that might be able to help get it removed.
Many thanks.
Hannah

Mommy to those Special Ks said...

Hannah, if you email me, I will link you. CAmommy2KJ@aol.com

Kele said...

I am so glad to read this post, even tho I am 4 months late... LOL! Just today I was in Dicks Sporting Goods and over heard a teenage girl tell her mom she wished these t-shirts she was looking at 'didn't have such 'R' sayings on them'. I have no doubt she just uses the word very flippantly but gosh it hurts!!
I hope to raise my children to grow up with such a sense of security in themselves that when they hear that word in their peer groups they can stand against it. I realize it is hard to do such things at that age but that is my hope. To work diligently to instill the needed love and acceptance within my children so they have the confidence to make that stance.
So glad I found you and your family in this world of blogs!

the original Awareness Warrior said...

That word makes me shudder...not just because some people have a medical diagnoses of it, but because of how it is used. I have Sam (my 10 y/o brother) trained to a tee regarding "the word". He came home one day and told me he's no longer hanging out with a certain now-ex-friend, because he won't stop saying the "R word" even though he explained what I told him that it is a MEDICAL TERM, not to be used otherwise whatsoever, that it is cruel, and that kids who are mentally "retarded" are NOT stupid but have a MEDICAL CONDITION. Every time someone says it, my little mini-me is there telling them how mean it is and educating them on what retardation truly is...a MEDICAL TERM.

Ya know, that kid can really be a brat, but man I love him!!!

I don't know if you know "MamaMia" on myspace, but she posted a series of blogs about the movie "Tropic Storm" (or something like that!) and the way they use "the word", including in their advertisements ("Once upon a time there was a retard"...) and how the movie should be boycotted as well as the actors/directors/etc.

The whole thing just disgusts me...how can people let it become such common talk? How can people take innocent children (and adults) with disabilities and use them for the target of their jokes? Use their disability as a put down? It's beyond me, but one thing I know for sure is that my kids will NEVER be allowed to say that word in common talk...NEVER! I don't care if they're labeled goody-two-shoes for it, my kids are going to be raised with morals & values!

Oh, and have you heard/seen the "special olympics" song/video from Stephen Lynch??? I was horrified! It was basically a song making fun of "special needs" kids and the Special Olympics. One of the lines goes "Kid with downs wins the race, even though he stood in place. 'Round his neck, gold medals hung. Resting on his giant tongue"....It's appauling! To this day that "song" haunts me, and disgusts me! I almost threw up when I first heard it! How could anyone be so cold??? So heartless???

I better go now before I make myself too sick...I'm actually having a hard time getting and keeping my pills down after this.

~Alex, Awareness-Warrior, 13

hmshore said...

There is a lot all of us can do. Become an activist. Speak up when you hear the word. Don't worry about offending the offender. Just tell them it's hurtful and ask them not to use it. It feels good to do. Go to r-word.org website from Special Olympics and sign the pledge. Pass it along to all your friends. Change can happen if you make it happen.

waldenhouse said...

Renee,
I came looking for this post today because I think you spoke to the use of the "r" word so well. I wanted to let you know I am going to link this post to my blog - if you would rather I not, please let me know and I will remove the link.

Thanks - and thanks for the way you share your family and your thoughts with your readers.

Anonymous said...

I know I'm commenting a long time after this was written, but someone on another forum posted a link to your blog.

My little brother has cerebral palsy, and the "R word" is something I've hated since I was a little kid. Thankfully in recent years I've been able to speak up and tell people how disrespectful and insensitive they're being, but I wasn't always able to. My mom told me once that people like my little brother make us better people, that they help us to be more considerate and open and understanding.

This post means a lot to me, and I just wanted to let you know that.

Thank you,
E

Anonymous said...

I love what you write! u are so rite and u say it well! everybody needs to think this way!!!!! i also have a daughter with downs her name is Payton and she is my whole world! i love her more than anything..... i had the most perfect pregnancy.so easy!.and when my tests came back with a chance of having a baby with downs i didnt care at all she was my baby!But than i had the worst delivery....so many complications and payton had such a bad start with blood problems and stuff like that...so i am so much more thankful for life and everything i have now and i am deffenately ofended when anybody says the R word... nobody realy understands why this kind of stuff happens untill it happens to them...i know becouse i didnt. i also would like to say,... i am 22 years old and it is very rear for a woman my age to go threw what i went threw giving birth and almost dying and its very rear for a 22 year old to have a child with downs...so everybody pls think before u say things that mite offend people . becouse i am living proof that anything can happen:( to anybody. THANKU SO MUCH RENEE! FOR ALL U TALK ABOUT AND FOR BEING STRONG AND POSTING UR LIFE SO THAT PEOPLE CAN C! I LOVE IT!