Yo soy La Lay

adventures in family, faith, and Down syndrome

Advocacy #6: MAKE IT STOP!

The R word.

I mean, seriously.

It’s 2015.

Don’t say it.  Don’t avoid calling others out on it when they say it.

There are people who will try to make you feel really bad about telling them to stop using the R word.  They will tell you that you are too sensitive and they mean nothing by it and that people these days need to “lighten up.”

Be tough. Be strong.  Be brave.

Keep fighting.

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On letting go

I shared the following exchange on my Facebook page recently. I was speaking with one of my students. All of the kids are fairly “at risk” (struggling to maintain good grades) and this particular girl has been feeling very overwhelmed and unable to catch up.  She spent awhile telling me that she felt like she just can’t learn.  And then she told me this…

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People really don’t know Down syndrome.

47 chromosomes. Low muscle tone. Ability to exceed expectations. People-first language. Sensitivity to people with different needs. Highly insulting nature of the “r” word. Some people know. Many, maybe even most, do not.

I cannot hold someone accountable for what he has never been taught.

I wrote on Friday about how it drains me to hear the “r” word. In the moment, it’s really crummy. But it’s Sunday now, and I don’t even remember who the kids were that said it. One of my dearest blog friends (who shares her amazing story here) asked me if I had any tips on how to deal with it. My approach comes down to three things:

1. Teach: Remember that people don’t “get it” and we have to teach them. The intention of a person who uses the wrong terminology (like “Down’s baby) is not usually mean-spirited.  Sometimes it is.  Still, we can very simply explain and correct.  When it comes to the “r” words, I usually say something like “hey, so that word kind of bothers me.  Could you use something different?”

2. Don’t preach: Remember that it’s highly personal for us, but not for them.  Ranting and raving doesn’t help. I realize that it should be common sense to avoid the “r” word, but it isn’t. Venting at length does nothing more than make people feel uncomfortable with me. I cannot win all the battles and I win less when I fight with anger.

3. Move on: Let it goooo, let it go! (Are you singing in your head now??) Sometimes, I have to come home and vent to John, but then I stop dwelling on it. For me, the best way to move forward is by treating it as minor in the first place. My student who thought she had Down syndrome? That situation could be handled in three ways… I could ignore it (and probably get mad when it happens again), I could be angry about it (and make her feel upset and I’d probably end up a crotchety old woman), OR, I can see it as a chance to open someone’s view of the world.

The bottom line is this: just as I wouldn’t expect the average Joe on the street to understand the complexities of my child’s needs, neither can I expect that he would understand the feelings that I carry about this beautiful child. When it comes to interacting with the world, I choose empathy. I choose compassion. I choose love. And while I cannot expect the rest of the world to make that choice, I can choose to lead by example.

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(untitled vent.)

I do a lot of language correcting when hanging out with teenagers all day.  Normally, I don’t hear the word “retarded” on a regular basis. In fact, I could really count the number of times, Before and After, that I had to correct it on one hand. In a high school setting, that was promising. It seemed like maybe, the word was disappearing.

Until today.

3 different kids in four hours. Each kid got a lesson. One poor child even got pulled into my office and shown 47 pictures of Tessa all over my walls.

Every single time, it drains all of my energy.

I wonder if that ever stops?

What the heck, man??

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Brain Power

John said he wanted me to write something today… that he had checked the blog and was disappointed that I hadn’t posted in a couple of days.  It’s a push that I needed.  Truthfully, I have had this post rolling around in my brain for some time, but I have feared sitting down to write it.  This isn’t pretty.

You see, I’m a smart person.  I earned really good grades in high school and college, high test scores, all that jazz.  I have a Master’s degree that I worked really hard at.  I’ve always valued and appreciated the kind of intelligence that gets measured in schools.  A lot.   And now, I’m in trouble for it.

How often are others disregarded or disrespected because of a lack of intelligence?? And now, it’s making my brain spin.  It’s uncomfortable.  More than uncomfortable… it makes me hurt.

I’m not going to put Tessa into a box, but statistically, we can guess that school will be a struggle for her.  We can guess that she might not take Honors-level courses.  She probably won’t study law or medicine.  I won’t say never, but statistically, you know…

Sometimes, people in the world are going to have a hard time valuing her and her contributions because somehow, we’re living in a society that is really impressed by how “smart” a person is.  And rather than loving on someone who needs more help, we berate them.  We make or read and laugh at terrible internet memes about them – not always people with special needs, but people who do silly things or people who talk or act differently than what we have deemed “the norm.”  We put those people at the end of our jokes.  We don’t use the “r-word,” but we mock stupidity, burger-flipping, garbage-collecting.  We say things like “let’s face it, not all kids are going to college” or “he’s not the brightest crayon in the box” or “someone has to make my fries.”  In the worst of scenarios, we don’t even allow them to live.

All those comments are now personal.  They all sting.

Someday, someone will say something like that about my little girl.

I’m trying not to be overly sensitive.  I’m really pretty good at letting things roll off my shoulders.  I see a lot of value in all the different ways that people contribute to our society and I know that others do, too.  I know that a lot of people will really love my daughter and value and appreciate her while still making jokes about these things.  They aren’t bad people at all.

We just need more love, encouragement, support, kindness, compassion.

I’m working on it.

 

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On Language

Words are so powerful.  The problem is that words are also so tricky.

My life’s work is teaching students how to use new words to express themselves… to get what they need, to make a new friend, to experience the world differently.  The excitement of a student on a Monday morning who used Spanish to order in a restaurant on Saturday afternoon is beautiful.  16 year old teenagers beam from ear to ear as they tell me about how they understood someone in the checkout line at Jewel.  And I beam right back.   

One of the difficulties in teaching language is helping my students understand the differences in culture that can evoke strong emotion when a word is used incorrectly.  As a study abroad student in Ecuador, I lived with an absolutely wonderful family.  Toward the end of my stay with them, my host brother commented on how my host sister and I were similar.  He said that she and I are very intelligent, but like to have fun.  Trying to agree with him by saying that we are both kind of silly, I used the word “estupida” to describe my host sister and I.  Now, my Profe Junkroski taught me better than that back in my first year of Spanish, but in my rush to get my feelings out, I used a word that carries a much stronger meaning in Spanish than what I wanted to convey.  Her face flushed, as did mine…  it was painful and awkward.   

This is what happens when someone uses the word “retard” or any of its various forms.  

Let’s not mince words here.  The fact of the matter is that my child will most likely be mild to moderately mentally retarded.  That is an accepted and appropriate way for a professional to refer to her slower-than-typical cognitive function.  But it is not a word that is used to describe her as a person, nor is it appropriate for describing a mistake, or a rule that one might find bothersome.  It does not describe a friend who has done something silly, nor any other person or experience that is disagreeable.

You see, context is the tricky part of language.  And even the most mundane of words that we chose can evoke strong feelings in those around us.  Don’t believe me?  Say the word “mom” in front of someone who has just lost their mother or “pregnant” around someone who is struggling to conceive a child.  Don’t care?  That’s very sad and unfortunate for you.  

The reality is that we do not know the intricacies of the minds of those around us.  The joyful thing about language is that we have lots of words to use!  I’m not suggesting that one must avoid any and all words that could possibly evoke a negative reaction.  That is just impossible and quite unnecessary.  Again however, the word “retard” is only an appropriate way for a professional to refer to someone’s slower-than-typical cognitive function, and even there it is falling out of favor.  And rather than using the word “retard,” there are so many other ways to express ourselves that won’t turn the insides of our fellow human beings into knots.

When I called my host sister stupid, she and my host brother very graciously explained that the word I was looking for was “tonta,” with a meaning more similar to silly, which is what I actually meant.  If you hear the “r” word, might it be possible for you to do the same?

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