Wednesday, March 7, 2012

What The R Word Means To Me & My Family

Today is the official pledge day for Spread The Word To End The Word so I thought I'd like to do an entry about the R word and what it means to me, and my family.

As most of my readers know, I have two sons on the spectrum.  Only one has an additional diagnosis of a cognitive delay. When Beans got this diagnosis at age two I assumed he may eventually grow out of it, or things might change.  The developmental pediatrician didn't really explain to me what this meant, other then he was delayed in all areas.  I didn't think too much about it at the time.  I accepted him as he was, autism and all.  Not a big deal.

Then one day about a year or so ago, I happened to be waiting with my kids in our regular pediatricians office.  It was a lengthy kind wait. My eyes drifted over to Beans chart on the counter.  It was considerably bigger than the other two kid's charts.  I couldn't help but wonder what was inside.  I assumed nothing of all that much interest.  I decided to peek.  I came across the developmental pediatrician's report. I quickly began scanning it with my eyes.  I quickly felt my stomach drop as I saw the words 'mentally retarded',  'challenged', 'significant' and 'functioning' peppered though out the report. I could hear the doctor's voice coming down the hall, so I only got a small sampling of words before quickly shutting the folder before she entered the room.  This was not the report the dev, pediatrician had sent me.  It was not it at ALL.  I knew my son was delayed.  I knew that he seemed different then all of the other kids with autism I've met, but I had not thought that he was tagged as with an intellectual disability.

That night, I told my husband about it.  He was nonplussed.  He said he understood that the the day we had left the office 5 years ago.  I guess the doctor had probably said it, gently, between the lines. Cushioning the truth the way many NTs like to have it.  I was not able to infer this truth. I was not in denial, but I was not fully aware of our circumstances, either.  It didn't really change much for me after the initial realization.  Beans is still Beans.

I know that when most people use the R word they are usually doing it in a way that is making fun of themselves.  I used to be one of those people. (Not proud of that, but there ya go.) I know that most decent people would never call a disabled person like Beans a derogatory name.  I know most people aren't that awful.  I also know that the language we use reflects on the people that hold certain labels and statuses in our society.  Think about it this way. Think about every time you might be tempted to use the R word.  Maybe you made a mistake and said "I'm so R worded."  Or maybe something looked funny, or didn't work, or was wrong, or was defective.  The R word = those things, and my son has an intellectual disability that technically means the R word.  What if your name was replaced with the R word.  What if when people saw something nonsensical they said "That's so ______"  (fill in the blank with your name.)  What would the public's perception of people named _____ be?  Would who you are be affected by this?  Would you like to be equated with all these 'bad' things?  What if people said to you, "but I didn't say YOU were dumb.  I said the X was dumb.  Why do you take things so personally?"  You would probably know that they DID say you were dm,b, bad, wrong whatever indirectly by using your name, who you are to describe something unwanted, or bad.  This is what this sort of language feels like to those that are intellectually disabled, and the people that love them.  This is why it's harmful.

I want to leave you with a short video that I took of my son last night.  I was playing one of his favorite games with him, peek a boo.  He just loves this game and could play forever.  His smile and laugh is incredible.  Think of this face every time you think of using the R word.  Think of who you are hurting with your language. He is none of those negative things. He is beautiful.

*Sorry for the poor quality of the video.  It's a new camera and I was just trying it out. 


  1. Thank you Q.C.
    I would love to see you and beans playing, but the video wouldn't work for me...

    The "R word" means the same thing to me.
    I have worked with and loved so many people with all kinds of special needs in my life.

    Then you see these people, people that you love and know, depicted in medical terminology, terminology so narrow but revered in most circles for its authenticity.

    It cuts so deeply. Video or nay I know Beans is loved.

    They say that to see the value of someone. You need to see them through the eyes of someone who loves them. Thank you for putting yourself and you family out there in the big unknown. It does good.

    oxox Hannah

    1. Thanks so much for your comment. If you'd like to see the video it's here on my FB page:

  2. Have I said all this before? Sorry if I have!

    I always find labels tricky. Clearly, we need labels to help us communicate, but sometimes (often) the labels stop being just a description of a group who share some characteristics and become derogatory.

    The "R word", as you call it, has not been used so much in Australia and, although it has also developed negative connotations here (partly from all the American TV and films we get here), I wouldn't refrain from using it properly/neutrally here to discuss its use, except that it seems to be upsetting for you.

    What I found interesting was that one of my psychology lecturers was talking about disability and mental disability and said that he actually preferred the "R word" - except, of course, that it's now derogatory. This is because "disability" indicates that someone is UNABLE in some way, whereas the other term merely implies that there is some delay, block or challenge but not that they are necessarily incapable. So now I'm not comfortable with the term "disabled" either!!

    It can be so hard to sound respectful, non-derogatory and non-condescending when using labels!


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