Thursday, March 3, 2011

Spread the word.

I'm a little bit late to the party (what's new!?), but yesterday was National "R-word: Spread the Word to End the Word Day."

As a kid that had been teased for being awkward and bookish (hard to believe, I know!), I'd been taunted with "retard," so I didn't use the word myself, even before I had Simon. I thought it was crude, and childish (well it is). But, beyond that, I'd never especially noticed or took issue with other people using it.

My feelings changed dramatically a little over a year ago. In an earlier post, I recount the first time a doctor suggested to us that Simon might fit an MR diagnosis, and how difficult it was for our family to cope with. In the week following that appointment, when the news was still raw and my sensitivity heightened; I was shocked by the amount of times I heard the "r-word" used in casual conversation, especially by my students. Under the intense spotlight of my new association, the careless way these educated and overall extremely nice young adults used the word as slang was an awful revelation. They said it when they made a mistake, when a friend made a silly remark, even when they were simply irritated or annoyed by a person or a situation. Every single time I heard it, I felt that I'd been stabbed in the heart, and with each stab I was surprised by how much I could now be hurt by something that had always been there. 

Initially, each time a student said it, I'd simply say "we don't use that word, it isn't nice" and move on. They didn't know about Simon or our family struggles -- it wasn't something I ever talked about. However, it only took a few weeks, and what seemed like dozens of derogatory comments about my baby, for me to crack.

In a group critique a student referred to their poorly drafted solution as "retarded." I tried to quickly correct both the terminology and the solution, but the student persisted further self-denigrating their work using the "r-word." The student had no idea how it was hurting me, but finally, with my eyes closed, I firmly stated that their work was not retarded, nor were they. "Moreover," I said,"you should not use that word in a professional context -- or any other. You never know when someone -- like your teacher -- has a child with a cognitive disability."

You can imagine the whooooole lotta awkward silence that followed.

As I turned back towards the work on the wall, I could feel my face burn and my eyes sting. I didn't want the students to see my embarrassment, or my hurt. I immediately felt badly for "making an example" of the student. I was profoundly grateful that class was almost over.

After class, the student apologized, and I told them I knew they meant no harm, but I asked them to be more aware of their speech. I'm pretty sure they will be. 

Today, I have no problem calling people out for using the "r-word" inappropriately, and I've come to take it less personally.  I try to be nice, and non-judgemental, but I stand my ground even when they argue with me. It is my small way of trying to make the world a better place for my kids.

I do, however still struggle with "labels."

I firmly believe in a "call it like it is" approach to life; clearly understanding something is key to making progress, and a part of that is finding definition. However, I also hate the idea of putting any sort of limiting definition on my young son. It can feel as though we are predetermining his life's trajectory through medical diagnosis and fear of the resulting social ostracism.

When Simon was a baby and I first suspected that he had Cerebral Palsy, I was strongly discouraged from pursuing my speculation further by a therapist and a doctor who felt I shouldn't try to "label" my son. They made me feel like a bad mother for my suspicions, and because of that, I delayed my search for answers -- and appropriate help -- for many months. When I finally found the strength to put my foot down, it took mere minutes for a specialist to diagnose Simon and set us on the right path to more effective therapy and a broader understanding of how to help our little boy. I deeply regret that lost time.

Currently, we are still struggling with "labels" for our little guy -- with getting an accurate diagnosis, and thereby finding effective treatment. Some of our teachers, therapists, and doctors even conflict with one another on the use of labels, specifically with Simon's recent diagnosis. Which (of course!) complicates things. Fortunately, everyone seems to agree that Simon doesn't fit MR, and we're grateful. Grateful because it gives us even more hope for the future, and, to be frank, grateful to forgo another damn label.

However, I can't help but think that if there were no social stigma involved, our challenges wouldn't be quite as challenging. Doctors, teachers, and therapists might be more free to look for answers and seek help if they were less preoccupied with the social stigma of labeling a child, and freaking prejudiced parents out. I would still stay up at night worrying about my son's future, but I might worry less about someone inadvertently hurting him, making him feel stupid or simply less worthy because of his cognitive and physical differences. All because of labels that define his challenges, but that don't define HIM.

I wish that instead of seeing the name as a negative, we saw it simply as a way of understanding a situation, not a person. To be honest, the situation sucks a lot of the time. But, the people dealing with the challenge are almost always amazing.

The only way we can approach this modest utopia is for people to stop -- as a collective whole -- using the language of differences in a hateful or simply pejorative way, even in jest. It doesn't stop at "retarded," either -- because I agree with folks who conjecture that if you stop using one word something else will take its place, and eventually we'll be looking for a new PC term to replace our formerly PC term. The solution is to stop using ANY hateful language that gets its meaning from stepping on someone else's humanity.

And so I'm asking -- parent to parent, sister to sister, friend to friend, teacher to student, student to teacher. Don't just stop using the R-word. Stop using hate language altogether. Don't just stop using hate language, call upon others to stop as well. When you hear someone say it, or when you say it yourself in error, call the foul and take one for Team Simon. I know if you are reading this, that you will do that; for me, for Simon, and for everyone dealing with the challenge of differences in an increasingly homogenized society. We are ALL better than that. 

Go Team.

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