There are thousands of things that cross my mind every day, that I would like to write about. Yet the days slip by and I never get to them. I have notes strewn across my house on topics I would like to delve into. Often, I have a very deep sense of how I feel about certain things. Other times I am not so sure and I am looking for other people to share with me their point of view.
I am asked on occasion by those who feel comfortable enough to do so, which "word or phrase" do I prefer to have associated with Ethan. Most everyone knows that the word "Retarded" to describe a youngster isn't the politically correct verbiage. I think in all my parenting days with Eth the only one who has actually associated that word with him, was a professional doctor who was referring to the way she had filled out an evaluation form to prove disability for an application for services.
I actually have no problem with the word. My irritation comes with the connotation that is associated with it. Don't even think for a second that I have not been guilty of this my entire life. I spent half of Jr. High School walking around going "Duh", "Der". or hitting my hand on my chest and acting ridiculous. My Mom, bless her heart never really corrected me on this horrible infraction. I could also say my entire experience with the disability world could have been summed up by knowing a girl in our neighborhood, "Rosie" who had down syndrome. Yes, that would be the complete summation.
Over the course of the last seven years however I have had an entirely different set of spectacles in which to view this world with. For the first year or two of Ethan's life he looked relatively normal. I carried him around in my arms, and unless you were really paying attention he seemed fine. He glanced around the room with both eyes together, he giggled and laughed, cried. He seemed healthy. Gradually as his disabilities became more and more apparent, so did my struggle with how the world viewed him.
I felt enormous sense of shame and embarrassment. I did not want people looking at me "funny". I took Ethan out less and less. His coping skills with being out made it hard anyway, but it was very easy for me to make excuses as to why he never went anywhere with us. I felt guilty. I felt like the way the world viewed Ethan had some perception on me. I mean, I think we all consider our kids as a reflection of ourselves. If this is the case, my crying, moaning, screeching child was surly that way because of something I had done, or was not providing him.
After we got our first wheelchair, for a long time it became really unbearable. Taking him to the grocery store, people would either look forward and not meet your eyes, or they would stare. Kids are the worst. They look scared, shocked, and nervous. And, quite frankly their parents don't know what to tell them or how to handle the situation.
It was difficult. Hard. Disheartening. Painful and very lonely. I would try to discuss it with others, and sometimes that was helpful. It was great when I interacted with other disability parents because I knew they "got" it. Trying to explain it to my best friend or my sisters was hard. They listened. They cared. However, it is just different. It is almost an experience that you have to go through, before one can truly grasp what it is like.
Seven years later I am a lot more confident and calm about it. I let comments that I hear in others vocabulary roll off my back and for the most part I can ignore it. My kids friends, are well aware if they use the -R- word around me, they will receive a lecture. I have even chastised adults when I felt comfortable doing so. I've called people on the table about it, at work and once even in court.
So, lets talk about it.
Retard : to make slow; delay the development or progress of (an action, process, etc.); hinder or impede.
Well that pretty much describes Ethan doesn't it? He has major global delays, his abilities have clearly been impeded by his brain injury.
So why is this word so offensive to so many? I can only speak for me. It is the connotation that goes with it. It's the kids running around yelling "You are a retard", or beating their hand on their chest saying duh - or - durrrr. It's what we think of, when the word is said. It's people using it in a glib manner, attaching a word that describes someone like Ethan who has no choice in his impairment. and comparing them to another who is choosing to adopt behavior that mimics those who have no control over their actions or movements. It's adults who are laughing over an 18 $ salad, who mention how "retarded" the School Superintendent is.
As the years have gone by, my irritation has grown. I find myself stopping on a dime when I hear professionals use that word. I can still see myself standing in the office of our school district, while the secretary was on the phone. She laughed and then said, "Oh that is so retarded" It infuriated me. I literally just walked out of the building. The other day, a fellow facebook friend, put this in her status,
"anyone else think that the media in Utah is retarded to keep making such an issue out of the "legal high, Spice" being sold in smoke shops?! Let's just draw a road map for all the immature folks to locate it and give it a try. DER!"
I was too stunned to even comment. I owe her a note back on another subject and I just can't even sit down and type it.
Once I was taking Victoria and her friend Marci to Arctic Circle for a shake. I'm not sure which one it was, but one of them was making fun of the "Short Bus". I instantly saw red. I informed them, there would be no shakes today and then proceeded to give them the lecture of their life time. How can you tease someone about making stupid choices and then compare them to those who do not have the ability to be aware even of what they are doing.
I have learned over the course of the last few years from various different channels politically correct language. A new concept that is being pushed heavily is called "Person First Language" This one for me is very easy. Simple. It's exactly how it sounds. In a sentence you put the person first, then their disability if it must be stated, last. "This is my six year old son, Ethan. He is deafblind and has Cerebral Palsy" Or, "My friend down the street has a daughter with Autism." Never would I say, oh that is the Autistic kid. That puts the disability before the child.
Some would say I am too sensitive. That I need to just get over it. That I have taken things beyond what they need to be. No one means any harm. Statements are said in a hateful way about my son in particular. All of those statements may be true. That doesn't make them feel any different to my Mother's heart.
One thing I can tell you tho, is-- if people did not make fun of others by using the word retard, the word retard would not offend me, when attached to my child.
I was the worlds worst offender. I feel guilty to my toenails for all those times I said duh, and whacked my shoulder. I wish I could take that all back. I sure would not do it now, that is for sure. I hope this makes sense and gives a little insight into where I am coming from, and where I have been.
Awareness always opens windows and gives us glimpses into a life we may not understand or know. Thank you again, for braving this window with me.