That Word

Today, March 5, 2014, is the day to Spread the Word to End the Word.  Below is a post I wrote last May after a painful experience right here in my local, “educated” community.  Before you speak Think, Is it kind, is it true, is it necessary.  What one may think is a casual, harmless comment may make one who longs for the presence of their Baby Girl feel a moment of gratitude that she never has to experience such hatred, ignorance and ugliness.  Spread the Word!


There are many a day that I think I, perhaps, am no longer fit to mill about with the general population on a day-to-day basis.  A certain tolerance seems to be required that I am pretty sure, I no longer possess.

I try hard to remember that I have endured life events that may make me extremely sensitive to day to day happenings and random interactions with friends and strangers.  I also know that as sensitive as I might be,  is as insensitive and callous as others behave.

To add to my dumbfounded state, is that we live in a society that is all about being “PC.”  We all know that many derogatory names, sadly, can be used to describe various groups of people.  And I would like to assume that none of these names are used in this day and age… but that would be both foolish and ignorant.  However, you generally don’t hear these words bellowed at random places where families gather.

But there is a population that does not seem to always be worthy of such sensitive and “PC” protection and it both breaks my heart and makes me physically ill.  In this day and age, why?  I ask you, WHY? does it seem to be perfectly acceptable for a grown woman to bellow, “I can’t believe my check is the wrong amount, I’M SOOO RETARDED!”

I felt my blood go cold and my stomach flip.  This was my pool.  This was a lady I would  possibly be seeing on a daily basis.  I wanted to scream, I wanted to cry, I wanted to PUNCH HER IN THE FACE.  But I didn’t…and I don’t know why.

So I plead you, Dear Reader, to explain to me, why?  WHY?  I am the one that gets the stare down when I composed myself and responded, “Don’t use THAT word, it is really very offensive.”  Que long uncomfortable stares.  Luckily, thanks to my circus act, I am used to being stared at.  Cause that’s RIGHT…I AM the one they stared at.

I even looked the “word” up in the dictionary.  I had to read through two entries that stated, “retarded child.”  One that is “retarded.”

The third entry down I found this definition for “retarded”:   to make slow; delay the development or progress of (an action,process, etc.); hinder or impede.  

Never a mention of not having the ability, just that it might be delayed.  And guess what…IT MIGHT NOT!  Children with “developmental or cognitive delays” are extremely capable.  Capable of overcoming what others might see as limitations.  My experience is limited to Down Syndrome and Autism.  Both Madeline and Johnny amaze me with what they were able to overcome and what Johnny continues to achieve on a daily basis.  While delayed in some areas, Johnny’s first pre-school teacher said it best…”no one ever said Johnny is NOT SMART.”  And they never said it about Madeline either.

Shaking off that interaction has sucked my energy and sent my spirit plummeting.  For my Sweet Madeline, whom I ache for every day, I had a moment where I actually thought, “Thank God, she will never experience such ugliness and ignorance.”  And then I cried.  Because I would give anything to have Madeline here and be able to continue to experience all the ways she would charm and delight us.  

I am just so sad to know that in others eyes her life might have been viewed as less valued and unworthy.  And now she is forever protected from such hate in her heavenly home where I am sure she is delighting all that gaze upon her.  But that she had to leave us to escape such ugliness has sent me in a tailspin and I can’t seem to find my way out.

And now I feel sad for “that lady.”  (And I don’t want to.)  Because perhaps she will never know the value of every life.  She might not have a Madeline or a Johnny to bring joy to her heart and a smile to her face.  Does that make her “delayed?…I don’t know…but IGNORANT…yep, I think that’s THE WORD.








6 Responses to That Word

  1. Jim shunk says:

    I know it’s hard believe me I do but I just try to consider the source and try not to take it personal.
    Do you know how many times Ive heard people talking about Kids overdosing Accidental or on purpose and you always have someone that say’s something like what did the parents do to that child or why didn’t the parents stop them Etc. You get my meaning.
    WE just have to remember how special our children were and are and hold that as close to our hears as we can and know that no matter what anyone says it will never change that.

    • johnnypsmom says:

      Jim, I know that you are right. Sometimes it is just too hard to ignore. I am perfect by no means and would probably cringe to hear things I have said in the past. Maybe if we speak a little and the people know better they will do better. A dream, I know.

      • brenda coughlin says:

        I would have told her what retarded is. I would have gone off on her…or as my friend would say..”I would go New Yorker on her ass” Believe me when I say, she would have thought twice about that word. There are just certain things we don’t say anymore, “that’s so gay”, “that’s retarded”, Someone in a group I was mingling in one time said the phrase she had “jew’d somebody down” on a price (I had a friend in that same group who is Jewish. After pointing out the obvious, the offender was duly chastised. Sometimes, you just have to point out how awful things are when used in a derogatory fashion. That was not ignorant, that was just stupid. Would you walk up to a group of blacks and say something like…I won’t go there because we all know, that just isn’t acceptable. It’s old, its tired and its stupid!

        • johnnypsmom says:

          I have seethed on this for a week now. I am glad I said something but I should have shown a little crazy cause she didn’t seem to affected, sadly.

  2. Jen B. says:

    Amy – I was there. And I did nothing. I didn’t know what to say. And in the instant that my brain was trying to figure out how to respond – you did. You let her have it. And I cheered for you. I could see that she was uncomfortable, and probably thinking, “Geesh…what’s wrong?”

    And I did nothing.

    To be honest – I was stunned that there was someone who still used that word. I mean, after all, its not only NOT pc, but it’s so totally 80’s. 🙂 It jolted me in a different way than you, but it was still jarring. After reading about your fabulous family, and admiring from afar, I now know where the emotion comes from.

    You write beautifully – full of pride and emotion and grace. Thank you for sharing. Keep writing. And keep yelling at those who use THAT word. I will too.

    • johnnypsmom says:

      Jen – Thank you for your message. It was very powerful to hear a response from someone who shared this experience with me. I was rattled for a while after that. I agree, I don’t think she got it after I said something even and probably thinks I was crazy, and if so, very sad. Thank you for speaking up for those who do not have a voice, those who do make such a difference for Johnny and Madeline and me, as well.

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