Change the Conversation. Please, I’m Begging You…

Okay, so I have to be honest with you all. I first became aware of the Spread the Word to End the Word campaign (to remove the word “retard(ed)” from people’s everyday vocabulary) only one year ago when a friend of mine brought the campaign to our university.

While I wasn’t aware of the movement, I’ve always been a proponent of its message. I have always HATED the word, and HATED how casually it’s used. But, honestly, this hatred wasn’t because I have a disability; it was because I am a human being. And I believe any human being can, or should, understand why this word can be so damaging to so many people.

In fact, it wasn’t until today, reading Ellen’s post that I was hit–hard–by the reality this effects every single one of us. Physically disabled, intellectually disabled; the word is discriminating in itself, but the hurt caused by the use of this word does not discriminate. Basically, Ellen set up an alert on Twitter for anyone that used or tagged the word “retarded” in their posts. She then replied to each of them explaining how their use of the word could be hurtful and damaging to so many. Please take a minute to view her post. It will amaze you ( or at least I think it will) how many people just don’t get it and how many people are not afraid to make it clear that they don’t care. There were some poeple who, Ellen reported, thought and apologized, but it’s still shocking.

One user in particular really was my reality check. They replied back to Ellen’s message saying something about a “photo wrecker”. Ellen did not know what this meant, so she looked it up on Urban Dictionary. For the record, this was the first I’d heard of the term as well.

According to the site, a “photo wrecker” refers to: “a retarded or disabled person”.  The example they used was:

Question: “Who’s the photo wrecker you’re posing with?” Answer: “Oh, that’s Stephen Hawking.”

Absolutely disgusting. That was the point where I lost it today. I sat at my computer and sobbed. Realizing, for the first time, it effects all of us. I cried until I had nothing left, until I realized I could do something about it.

So here I am tonight. Asking each of you, from the bottom of my heart, to do what you can to Change the Conversation. Thank you.


First of all, this post was inspired by Ellen over at Love That Max. I’m not sure if I’ve talked about Ellen before, but she’s mom to Max, a wonderful 7 year old with CP. She is an amazing mom and all she does for her children definitely shows through her writing! Ellen’s blog was the first I followed and I’m simply addicted to it! Check it out and I’m sure you will be too! Her blog really inspired me to put everything out there in each of my posts, because you just never know who might stumble upon it one day. THANK YOU ELLEN! 🙂

This week is Babies Week on Discovery Health Channel, and they are premiering a new show called NICU following 3 top Neonatal Intensive Care units in the country. This show is pretty exciting for those of us in the special needs community, because it showcases the beginnings of life which so many of us have experience with (preemies, trauma at birth, etc.) I invite you all to read Ellen’s post about the NICU experience and the connection we all share before continuing on with my post here, because I can’t do it justice…

Did you finish reading yet??

Really, I meant it, go read the post.

Okay, you should be done now! This post really touched me, for the obvious reasons, and because everything that Ellen talked about knowing as a mother of a child with special needs, I can say I have also felt or known growing up with CP. This is what I said in response to Ellen’s post. I don’t think I could say it this way if I tried it again, so I’m just going to paste it in.

I know that a lot of parents read this blog, so on a post that touches so many of you, I thought maybe I’d share a “child’s” perspective…I’m not a parent of a child with special needs. I am a child with special needs. Well, more an adult now, but every one of those things you mentioned that you know as a parent of a child with CP, I can honestly say I know each of those too, having CP. It’s obviously very different for a parent than it is for a child. I don’t remember a lot of what would have probably been the “tougher” times for my parents, but I do remember my own thoughts of doctors visits, surgeries, etc. They are tough, they effect a child’s life, but I’m here to assure you…your child is strong and will make it through each of them as they are meant to.I know what you mean about always feeling that empathy for preemies even though Max was not a preemie. I was a preemie (born at 24 weeks), so I too have that connection. For me, that empathy comes more from seeing my own experiences possibly play out in the life of another child, experiences that I have no recollection of and that I will probably never have the courage to ask my parents honest questions about. Now that I am an adult, that empathetic connection comes in the form of thinking about preemies now, the technology that medicine has to give them such a great shot at high quality of life. And it also comes in the form of thinking about my own children I someday hope to have. Will I have a preemie child myself, will I watch them struggle in some of the same ways I have, or–perhaps even more strongly weighing on my heart–will I be upset and even slightly jealous if my child learns to walk within their first year of life, while I am still trying at age 22, will they surpass their own mom in milestones?I don’t know what so many of you face daily as parents of children with special needs, but I do know we are all connected–parent and child alike, and you can bet I’ll be DVRing and watching along with all of you in my community tonight!

I hope you all tune in, or DVR the premeire tonight on Discovery Health at 10 PM ET and PT.
Oh, and, Ellen said I should be a guest poster on her blog, which is pretty darn exciting!! 🙂