Follow up to the R-word

Wow. I never imagined that little Five Guys story would have touched so many people! When I was writing it I really had second guesses about it--I didn't think it was all that interesting. I mean, it was cool when it happened, but it didn't seem like anything out of the ordinary. Except the free fries. The whole episode passed rather naturally and comfortably. I guess I ought to get ready for a more confrontational situation some time.

Our family is pretty insulated against mainstream popular culture. We're not complete granolas here, but we definitely march to a different drummer. Since we homeschool it's easier to avoid negative closed-minded people. Even though we are by no means isolated--we're out and about in the community and interacting with all kinds of people--we're just not boxed in. I don't have to worry much about who has access to my kid, or who will say what to her or about her.

We do work on toughing Hannah up some. She has a pretty thin skin when it comes to teasing. We're working on getting her to recognize the difference between "fun" teasing and "mean" teasing. When to ignore things and when to laugh along to have fun, and when to ask for help. It's hard because we can't possibly come up with all the scenarios she might encounter.

Back when Hannah was an alien my wise sister gave me some good suggestions: "We did a lot of role playing with Stephen last year before he started Kindergarten. He's short, so I'd call out, "Hey Shrimp!". It took a while for him to learn to respond, "Heya, lobster!" Boy was that time well spent! Wish I'd done it with my over-sensitive girl. We have a good book called Sticks and Stones that goes through various anti-bullying techniques to teach kids. One of our favorites is "you might be right". No matter what someone calls you, you reply, "Yep, you might be right!" I've seen this in action, and it makes the name calling game boring pretty fast."

I feel that negative teasing and name-calling does far more damage than the casual usage of the r-word. Clearly Hannah didn't pick up on the Five Guys guy's muttered phrase. There was no immediate harm done to her when he spoke those words. Of course, she doesn't yet have an understanding of what "retarded" means. She does know that she has Down syndrome, and that the extra chromosome gives her body extra directions that make her uniquely Hannah. For the most part, she sees herself as equal to everyone else. She clearly has a strong self-image and has innocent, ambitious plans for her future--to be a dentist, a ski-jumper, a veterinarian, a ballerina, a dog-trainer. She doesn't feel that she has any limitations. And I don't want people putting limitations on her--neither with low expectations nor with their hurtful words.

I fully expect Hannah will eventually recognize her own limitations, the same as the rest of us who once imagined winning Olympic Gold or becoming the President . I know we'll have to help her through as she realizes what Down syndrome means to her--most likely she will not have babies of her own, she may not be as independent as she wishes, she will have loneliness and disappointments. Just the same as the rest of us.

The difference between our own life struggles and hers is that we don't have as many other people telling us who we are and who we aren't. We don't have people disbelieving our abilities--people who are consistently surprised that we are able to do typical things like read, shop, dance--people who are putting us down, putting us as second-class citizens. I am glad that Hannah doesn't have to be exposed to this yet.

I don't like the r-word. Yes, it's part of the puzzle. But I don't think it's the worst thing. If we eliminate it, there will be a new word to take it's place, I guarantee it. The same as moron, dumb, imbecile and idiot. Not too long ago saying "idiotic" felt the same to some families as "retarded" feels to us. But the words are not the worst thing. The worst thing is not being able to change people's minds about what difference and disability means. I think that only happens one person at a time, usually by someone like Hannah, or Jessie, or Vignesh, or Jude.

Yes, another Blogger with an R-word story. How timely!

I haven't had any "R" word experiences. You'd think that with a nearly-12 year old child with Down syndrome that I'd have come across it more often.

Well, I guess that isn't true. I have had occasional friends or acquaintances slip and use the word, but with a quick apology they have shaped up without much intervention.

But Tuesday night Hannah and I went to 5 Guys for our annual allotment of grease and calories. I have been to 5 Guys one other time, when Chris was craving a burger during a long hospital stay for broken vertebrae.

The first thing I noticed was that there was a hand-written sign on the door.

"We cannot except credit cards at this time since our machine is out of order."

This irritated me of course, not because I didn't have cash, but because of the incorrect usage of "except". I'm such a snob.

We entered the restaurant, and were greeted at the counter by a polite young man, probably about 20 years old. A similar sign excepting credit cards was on the counter. After a friendly greeting, I teasingly said (though perhaps shouldn't have), "This bothers me--the word is "accept", not "except". I am a teacher, and this should be corrected." The young man didn't really understand the difference between the two, but trying to appease the customer, offered up, "Oh, that was _____'s sign. She's retarded."

I knew he was using the term as popular culture does. In a friendly way I said, "Excuse me? Did you say retarded? That is not a word to be used. You need to pay attention." He was confused until I nodded my head towards my daughter (who was oblivious to the entire thing as she was studying the menu). He immediately apologized, looked me straight in the eye and said, "You're exactly right. I won't use that word again." I said, "Thank you. The word 'retarded' is just as bad as other words, you know, like the n-word." (I figured I'd play this card since he'd be sensitive to someone using that word.)

He apologized again and vowed to never use the word.

And then he gave us free fries.

After enjoying our dinner, we were ready to leave. He called out, "I meant it! Really! Have a good night!"

Not so nice....name-calling

Well, I knew there would come a time when someone would be mean to Hannah. Everybody gets their feelings hurt on occasion. It's bound to happen.

Today was Hannah's day.

I don't have all the details, because Hannah couldn't or wouldn't explain very much about the situation.

We went to the gym this morning for the first time in many weeks (travel, guests, my back injury). There is a Kids Zone at the gym, and Hannah usually hangs out in the habitrail tunnel climbing thingy and stakes out an upper corner where she gets a good view of whatever DVD is playing. There are many activities for the kids, generally divided by age grouping, but she usually prefers to get in some free screen time in the big room. She stays in the kids' area while I do my cardio, then I usually have her join me for the weight machines. She likes to do the stationary bike (very slowly).

Today there were many many kids--it's only one week away from public school starting and I think the parents are starting to get antsy and want to get some space! The bigger kids were in the kids' gym playing games, but Hannah chose to stay in the main play room with the younger kids.

When I went back to get Hannah, I couldn't see her in the crowd, nor up in her regular crow's nest perch. The workers called out for her, and found her in the depths of the tunnel labyrinth. I could tell that she had not had much fun.

When we went into the locker room, I asked her what was wrong. Her glasses were filmy with dried tears.

She said, "They called me an Alien. They said I was an Alien. I'm NOT an Alien." Then she cried.

I tried to find out if the kids were playing outer space or something, but apparently not.

From what I can piece together, there were a couple of boys, probably around 6 or 7 years old, who decided to harrass her. They repeatedly called her an Alien. Of course, the first thing I thought was that it was their way of describing how she is different. But I don't know that. It could be that they were playing Buzz Lightyear. She said, "No, they weren't playing. They were being bad."

I guess it's time to start working on come-backs so she has a script to use in cases like these. We usually do role playing--lately we've been working on getting her to recognize when someone is playfully teasing, and what an appropriate response should be. We'll have to broaden that to include ignoring people who are rude and mean.

We left the locker room, and went out to the pool. It's been chilly the past few days, so I let Hannah take a dip at the gym instead of freezing at the neighborhood pool. (I am so dang nice like that.)

Right after she got in the pool, a girl about her age swam up and wanted to play with her. They played together happily for nearly an hour! It was just the remedy we both needed. It also didn't hurt that I witnessed Hannah win an informal swimming race, fair and square.

Tonight we talked about what to say and do when someone is bothersome. We'll keep working on it. Hopefully the next time she feels marginalized she'll have a way to stand up for herself a little more. I considered telling her that she could respond by saying that she was a legal US citizen, but what are the chances that someone else will call her an Alien???

A New Day!!

Please go pledge to end the derogatory use of the word "retarded".

Years ago the medical terminology for classifications for lower cognitive funtioning were Idiot, Moron and Imbecile. These words have been completely incorporated into everyday speech. The same thing is happening with the word Retarded.

Let's work to clean up our speech and our attitudes towards individuals with cognitive disabilities!