Sticks and Stones.
I called a medical clinic to make an appointment for Elliott, as I tend to do in a typical week. This particular appointment was of the dental variety. Our cleft team recommended two dentists that specialize in kids with additional medical stuff going on.
I call the office and speak to the woman who answers the phone. We discuss various locations of the dental office and she says "at the other clinic Dr. Y sees normal kids"...
Uh, what the hell lady?
I almost threw the phone.
I paused, stunned that a medical professional representing an office of a hospital that literally specializes in children of all walks of life has just uttered a sentence so ignorant. I responded 'Whoa... yeaahhhh, you might not want to say that to any other parents as it's very offensive." She apologized (maybe sincerely? I really couldn't tell) and we continued on with booking an appointment.
This experience was a reminder (not like I really forget) that for my entire life I will be educating people that my daughter is just a kid. I carry such contempt for the various terms that float around forcing me to label my child as if she were anything else than my child.
Let's explore these terms shall we.
- Special Needs: We ALL have special needs. Every person in my life has special needs. Let's take Brad, my wonderful husband and baby-daddy. I have to give this guy about a months notice if something (anything) is going to change. Otherwise, it throws his world off its axis. And even at a months notice, it's still tough for him to swallow. Now me. I personally need 9 hours of sleep to be a kind person, that is preeeeetty special. I haven't had 9 hours of sleep since my second trimester. So, lets see - EJ is 18 months old + 3 months of pregnancy where I didn't sleep at all because I was GINORMOUS, minus 2, carry the 1 - yep, got it. Let's round to 2 years of no sleep. I for one am immensely impressed I didn't yell at the "normal" lady. <Here is a creative special needs video released on World Down syndrome Day 2017>
- Disabled: Good Lord, who decided to market the word that starts with "Dis"? It is negative by it's very nature and everyone was totally cool with that? Everyone in the room looked at each other and nodded, "Yeah guys, I think we have it. Disability. It's perfect." Like someone who has a disability doesn't have enough to fight that they now have to battle the negative connotation in the very label assigned to them. <Here is an interesting video on how to not dis someone's abilities based on preconceived notions>
- Differently-abled: If I muuuuust label my daughter, and it appears society is telling me that there are times I must, this is one of my preferred options. I still don't love it because truly we are all differently-abled. We all learn differently, see things differently and do things differently. Elliott is no exception.
- Downs: No. This is term used for a long time and is counter to "person first language" - where the person comes before whatever he/she may have. If Jim has cancer you wouldn't say "He is cancer". Similarly, if Bill has Down syndrome you wouldn't say "He is Downs". Cancer or Down syndrome are something Jim and Bill have, it is not who they are. Jim HAS cancer and Bill HAS Ds. This one is tricky as the older generation of parents to childen with Ds grew up referring to their own children as "Downs". Even today when I'm meeting parents of adults with Ds they will use this term. It literally makes me cringe... but I say absolutely nothing. Why? These are the same parents who battled their medical professionals and the suggestion to institutionalize their kids and never speak of them again. (I die.) It is not my place to educate the warriors who came before me. Rather I am tremendously grateful for their courage and battles won! Though I do hope to reinforce the movement away from "Downs" for my generation and anyone after me.
- The "R" word: *sigh* Ok, folks, here we go. I recognize that this was the word of choice for decades and old habits die hard. While I can't remember specific instances or it being a frequent habit, I am beyond ashamed to admit I used this word in my youth. Most often, I hear the word exclaimed from the traditionalist generation and baby boomers but sometimes from generation X members too, and then of course if they use it... their kids use it. The cycle of ugly words continues. Ugh. Neat. (A topic for another 21st.) It's a word I truly didn't give a thought about before Elliott. Now, I can hear this word in a crowded room full of loud conversations, as if someone had just spoken my own name. It stops me, mid-breath, and I'm forced to make a decision on how to react. I can site that almost every time (2 of 3) I've heard it used in my presence I have chosen to address it and respectfully educate the speaker. Though the first time I was so taken aback and ill-prepared that I just stood, stunned. This new generation of parents with kids who have Ds are on a mission to get this word eradicated. I fall into this camp. The "R" word is a slur. It insults my daughter which insults me. If we think throughout history of the words we formerly used to describe cultures, people, and groups different from our own - it's astounding how many have been rightfully retired. So many of these words were hateful and degrading, and worse, intended to be that way. If you use the "R" word, I beg you - from the bottom of my heart, please stop.
BBB: Brief Brad Break
I am introducing something new to the blog called a "Brief Brad Break". This is where my wicked smart husband informs me of something pertinent that should be added to the post. You see, Brad keeps up with things like politics, our economy, and history in the making. I keep up with the newest mascaras and home decor trends. So I think we can all agree the BBB is a welcome addition.
BBB: In 2010, Congress passed Rosa's Law which removed all instances of the term "Mental R..." from the Federal Register (which is all laws, rules and regulations by the federal government). The term was replaced with "Intellectual Disability". In addition, MR was replaced with IDD (Intellectual Developmental Disabilities) in the DSM-IV (Diagnostic and Statistical Manual) which is published by the American Psychiatric Association to better align with the WHO and other global guidelines.
Thanks Brad!
- IDD: Last but certainly not least. IDD is a term to encompass anyone who has an intellectual and/or developmental disability. Yes, it contains the "dis" word that I dislike (see what I did there?) but it's embedded in an acronym which somehow makes it easier to swallow. Don't ask me why.
Sticks and stones may break my bones but words will never hurt me.
LIES.
Words impact people. The words I choose to use are chosen with purpose. I write the story of my daughter because I know the words I would use to speak her story would be lost in emotion. Writing allows me to give thought, immense thought, to the words that will accurately express my feelings and introspection on our story.
When Elliott is meeting a new person for the first time, I find myself bracing for impact as he/she starts to speak about Ellie. As they talk, my mind races to toggle between the words they could chose and to prepare accordingly. The words people use to label my daughter can hurt me, and sometimes they do. Sadly, this is something I will learn to navigate with time - with practice. What words will I choose to respond to them? 4 letter words perhaps?... nah. Maybe in my mind, for a moment, but really I want to use these encounters as an opportunity to enlighten - the speaker and my daughter. To open the mind and heart of someone who has not yet come into contact with a mama like me with a daughter like EJ. Also, and perhaps more importantly, my precious girl will be watching; learning from my reaction on how she should react. I want her to be confident to respond appropriately when I am not around to curse. I mean enlighten.
I can recount multiple cringe-worthy moments of my life when I've allowed myself to speak quickly - with emotion but without thought. I can recount multiple moments where I didn't say what I wanted to or should have. I've offended, belittled, demeaned and hurt so many. I would give anything to take these moments back - but I can't. None of us can. Perhaps the phrase should be revised:
Sticks and stones may break my bones but words leave scars - memories we can't erase.
Until the nexT21,
Aubrey
