Spread the Word to End The Word

March 31, 2009, is just another day for most people. For those of us who love someone with a cognitive disability, it is a benchmark. A line is drawn in the sand, and an army amassed to turn that line into a trench. A boundary if you will, a border that in our family and life is not to be crossed. We will not tolerate it.

On March 31, 2009, the Special Olympics is asking everyone to join us, plant your feet, and grab our hands and a shovel to dig the trench with us.

After Larkin was born, I was tolerant and sociable about those who chose to use the R-word as an insult. I would be quiet and figure that maybe by my silence, they would figure out the offense. Sometimes I would point it out. Andy, on the other hand, is very much in your face, and I have cringed at times when he lets someone know. Andy is quiet, reserved, and prefers one-to-one conversation versus a crowd or party, so it is impressive to watch him explode sometimes.

Please do not respond to us that you “don’t mean it like that” because frankly, there is no other way to mean the word when you use it to describe something you consider of less value or to insult. Do not add more insult to injury.

I will tell you a little story about how my position on the R-word morphed when Larkin was diagnosed with seizures in March of 2006. Infantile Spasms came first when she was only three months old.

Larkin was admitted into Carle for observation and for me to learn how to give her injections two times daily. Andy was in and out of the hospital visiting us, and I had a lot of time to think. When I am trying to absorb medical issues, I get reticent, but I never back away from the hard stuff. It is my role as her mother, advocate, and wife. Andy is good at many things, and I rely on him a great deal, but it is always my job to absorb, plan, implement, and relay all of this to him. We are a team, and this is my part.

Late into the night, sleeping in a bed next to her crib, I knew there was a question I had to verbalize. I did not want to hear the answer. Nevertheless, I had to ask. At 6:30 in the morning, Doctor Kennedy, a pediatric neurologist at Carle, showed up at our bedside. I was curled up, spooning with my sleeping baby. My sweet, innocent, beautiful, loved little girl.

“Will she be more delayed because of this?” I asked. “Yes, most likely,” she said back ever so gently, with a nod of her head.

6:30 a.m. is not the same anymore.

Neither is 1:47 p.m. when we heard “Larkin has Trisomy 21” (Down syndrome) October 2005

Or 4:16 p.m. when I heard “It looks like Lennox-Gastaut” and my reply of “that’s a death sentence”  August of 2007

Life changed drastically at each of those times by the word Retardation. Retarded. We quit breathing, blood pressure changed, and our little girl labeled. Therefore, you see – I will never tolerate you using my sweet, innocent, beautiful, loved, little girl’s diagnosis, and life challenges, as an insult.

There was a time when parents welcomed the R-word because 40 years ago, it gave their children a diagnosis beyond, idiot, stupid, and moron. Today we use the term delay, and while it does not take the hurt entirely away, it helps it not to sting quite as much.

We love our girl. We love her friends, peer group, those who we have met along the journey.

We respect all those who daily fight the challenge of fitting into a world where they are often rejected and ridiculed.

Our children are not able to fight back. They only know how to laugh, love, and respect you. Do they not, at the very LEAST, deserve that back?

I invite you to the line. I invite you to hold my hand. I invite you to dig the trench with me. I hope you join us on March 31, 2009, as we Spread the Word – To End The Word.

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9 Responses to Spread the Word to End The Word

  1. We are joining hands. Did she get ACTH? Jax had that for a while to.

  2. Ami G says:

    Sign me up! I have never liked the R word used in any form…I hate labels and hate labels used as insults even more. Every diagnosis Larkin has makes up a part of her but she is so much more than any of them individually or in total it really is time to make the ignorant sit up and take notice that use of words such as the R word is not acceptable!

  3. Melanie says:

    Once again Amy thank you for that. I am so sick of people using that word. I’ve heard it for many years from different people in and out of our family and it hurt every time we had to try to correct someone. Often we would get the response of you don’t have to be so defensive but yes I did…that word to me is very inappropriate and needs to be stricken from the English language. Love the this post and I will stand in line and rally to have this word banished. Hugs to you all!!!

  4. This is so powerful, and so important. As always, when I read your blog, my world and my perspective is broadened a bit more. I want to support you in this line-drawing in whatever way I can, through my blog and Twitter networks. Hugs.

  5. Julie Gifford says:

    Right on sister friend! We, the entire Normal Gifford family, promise not to use the R- word when it describes “humans”…to coin Owen’s word. We liken the word to austic; not our favorite word because it brings to mind a definite picture and doesn’t give the person with Autism a chance to prove anything else beyond that label.


  6. mrs.chicken says:

    People use words so carelessly, all of them—love, hate—all of the words that have such heft. This is a good word to eradicate. Check your email, because I want to help.

  7. Renee Garcia says:

    You have an award waiting for you on my blog! 🙂 Love you!

  8. Kirsten B says:

    I’m not a mother, but I am a teacher, and I know for a fact that all children are precious and wonderful. Because no matter if they are “normal” or “gifted” or “delayed” or whatever, they are bright, shining beacons of light in an otherwise grim world.

    As a child I knew a boy who had (I think) Downs Syndrome. Other kids shunned him because their parents did… but my mom encouraged me to befriend him, so I did. And he was a great friend. We played a lot together.

    It doesn’t matter if there’s “something wrong” with a child. What matters is that they love and we must love them back. They deserve our respect.

    I’ll stand by this cause.

  9. Em says:

    (left at Chicken and Cheese, as well)

    My post for March 31 has already been writen. Not nearly as eloquently as yours, I’m afraid.

    My Youngest has PKU. I too have been guilty of “blowing” it off when close friends use the R word, so as not to stir the pot. I should know better.

    Not any longer. I promise.

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