Spread The Word

I wrote this post back in November.  It is very dear to me, and I needed to hold onto it and publish it at a time when my emotions didn't feel so raw.

Today is "Spread The Word To End The Word"  an initiative run by http://www.r-word.org/  So today feels like a good day to share my thoughts and be part of a movement.

Original post below:

I love my Queen Bean.

When I was pregnant with her, and scared, I turned to the internet.  I lurked on message boards for people who had children with Down syndrome.  I saw a sentiment repeated over and over again "I didn't know I wanted a child with Down syndrome until I had one."  I read this sentiment with equal measures of doubt and hope.  I wanted to feel this way, but was unsure I could reach that point.

But it is true.

I love my daughter.  I love every single chromosome in her body.  I wouldn't change a thing about her.

But I do want to change the world she lives in.  I want to reshaped the culture into one where she is unconditionally accepted and loved and not looked upon with fear and a sense that she is "other."

I believe the first step to doing this is to change the language people use when they talk about children with disabilites.

The first step is to use "people first" language.  She isn't a "Down's baby".  She is a baby with Down syndrome.  It is a subtle difference, but the first puts the emphasis on her condition, the second puts the emphasis on the fact that she is a baby, she is a human being, she is a person who happens to have Down syndrome.

Another change in the language is the banishing of the word "retard" from the common vernacular.  It is short for the term mental retardation, an outdated medical term that is now used solely as a pejorative.  When you use it you are comparing something to people who are intellectually disabled, and you are saying it is a bad thing.  You are saying my daughter is a bad thing to be.  You are also saying it is fine to make fun of people with intellectual disabilities.  You are saying it is fine to make fun of my daughter just for being who she is.

That is not okay.

I did not realize how important this issue is to me until I found myself arguing with an idiot on the internet.  He was ready to defend to the death his right to speak this word as part of the language of his birth.  It didn't matter to him that it is insulting, it is dehumanizing, it is demeaning, it is harmful, and hurtful, and hateful, and unkind, and unnecessary.  There is no instance when this word is the only word that can be used to describe something.  If you feel this way I think you are displaying a distinct lack of imagination. But who was I to tell him how to speak?

I am a mother of a child with Down syndrome.  I am a mother of the person you disparage when you say this word.  I am a mother who will defend to the death the right of my child to live in a world where she is not the object of ridicule by people who are obviously smart enough to know better.

And because the universe has a funny sense of humor, two days after my online encounter one of my children used this word in my own home.  So busy arguing with idiots on the internet I failed to teach this lesson in my own home.  Lesson learned universe.  Lesson humbly learned.

I explained to my children the history of this word and they were appalled.  They insisted there was nothing wrong with Queen Bean (because there isn't) and that people must never make fun of her (because they shouldn't).  Their easy acceptance of the idea that this word was wrong, and should never be spoken soothed my heart.

I firmly believe this is a word whose usefulness has passed.  It is time to retire this word.  Much like we no longer use the n word.  Or call people "gay" or frankly a whole host of other terms that I simply can not bring myself to type because they are words that should never be used.  And we have stopped using them because the people who these words harm have asked us to stop using them.

And now we are being asked to stop using the r word.  Maybe you don't get it.  You grew up saying it.  You don't mean it like that.

Does it matter?

You are being told that it hurts, and you are being asked to stop.  Don't the people to whom this word refers deserve the same courtesy and respect that was shown when we stopped using the n word and all those other hateful words.

If you don't understand that.  If you feel your right to use this word (1st amendment, freedom of speech and all that) is sacrosanct and supersedes the wishes of anyone else, then please quit reading my blog.  If you know me in real life, please just quietly disappear from my life.  This is important to me.  I'm picking my battles and this is one I will fight.  This is my hill to dies on.  If you want to say this word than please find someone else to say it around.  That disrespectful attitude has no place in my life, and you have no business being around my daughter.

This is important.

And on this one, for the sake of my daughter, there are no second chances.  Utter this word around me or any member of my family and that will be the end of your welcome with my family.

As an addendum to this post I would like to add that you must never ever say this word around my son.  He will kindly explain to you why you shouldn't use this word.  And if you continue to say it he will grab you by the head and straight up punch you in the face.

True Story.