Awhile back I forward on a wonderful post by a another mother of a precious little girl named, Rowenna. The blog talked about not referring to children with the diagnosis of Down Syndrome as “Downs Child” or “Down Child” or any other way where the diagnosis is the child and not something the child has.
Simply put, you wouldn’t call a child with chicken pox “Chicken Pox Kid”, an over weight woman as “Obese Woman” or a boy with cerebral palsy “CP boy”. These diagnosis don’t make the individual. The individual HAS the diagnosis.
That being said, after posting this particular blog, I received a comment from a friend of mine from Mabel’s Labels who mentioned a situation she was in where a mom of a child with Down Syndrome was head counting her kids and said “now, where’s my little downsy? oh, there he is”… ARE YOU KIDDING ME?!?!?!?
My friend commented that she was very taken back. She has experience with autism and made the comment that she has never heard anyone use the “hey, where’s my little autistic” phrase.
My biggest frustration with having a child with Down Syndrome is society’s genuine ignorance to these individuals, their capabilities and inturn how to change these perceptions. To have a parent call her child that in a public forum makes me sick to my stomach.
Person first. Diagnosis last. It’s not complicated; just common everyday respect.
This past weekend I had the privilege of meeting another family of a child with Down Syndrome while out celebrating Canada Day in true Club 21 style at the Goderich Canada Day Parade.
Please understand, this family is very supportive and excepting of their child and his diagnosis but still some family members are using inappropriate language. Referring to having “one of those kids” or “Downs kids” etc.
I have two big problems when I find myself in these situations. First, I get so hung up on the language they are using that I can’t hear the actual conversation. Even though I know they are trying to support our kids, their choice of words is so insulting and segregating that it negates all that they are trying to say. Second, I don’t know how to begin to correct their error without insulting them because again I realize in this case there is no ill intent. Give me a blog to vent on, fine. Let me rant on twitter, great. But put me face to face in a situation that’s supposed to be fun and positive and I clam up.
Teaching “People First Language” is great and very important but how do you have that conversation in a face to face situation without insulting the uneducated speaker?
And for all those parents who should know better, I challenge you to choose your words carefully. You never know who may be listening.
They start at the moment you enter this world.
- Boy! Girl!
- Apgar 6. Apgar 10.
- Big. Small.
- Strong. Weak
- Breastfeed. Bottle fed.
None of that seems so bad. No big names that are going to rule your world or decide who you’re going to be. Right?!?!
Well ok, if you’re in China the value of a boy is much higher than that of a girl and of course you always want a STRONG healthy baby…and who’s kidding who, of course you’re looking for that perfect Apgar 10 and well, breastfeeding is “better for the baby”…..So a STRONG BOY with an apgar score of 10, who nurses well from its mother is ideal, Right?!?!
Truth be told, any of the above would be acceptable. Loved. Cherished. Welcomed by society.
But then the labels continue…
- Smart. Slow.
- Beautiful. Ugly.
- Athlete. Nerd.
- Fit. Fat.
- Rich. Poor. (….I could go on for days!)
And we put big value on these labels. Kids are bullied. People are passed over for jobs. Society gossips, whispers and judges. Look at any of the tabloids every week. Our ‘judgement’ is all over the covers. But what gives us the right? Because it’s not the ‘norm’? Some pretty ‘normal’ people have done some pretty horrible things in our world. Hitler was considered a normal child. I’m sure Jeffrey Dahmer was the baby his father hoped for but that ‘perfect’ label didn’t last long.
So let’s take a baby who is a good size, strong, nurses well and is thriving. Didn’t score perfect on the Apgar but after a couple of days is picture perfect…
Now, what if you added Down Syndrome or Autism as a label to this child? He or she is healthy. Nothing is wrong. A typical child.
Does his/her value instantly become less?
As a parent, you always hope for the ‘perfect, healthy child’ – I guess my question now is how did ‘PERFECT’ become ‘THE SAME’ as everyone else? I look at my daughter today and wonder why was I so devastated when we learn she has Down Syndrome? She’s perfect the way she is. Why would I want her any different? Why did I believe like the greater society that her value is less because of that label?!
I recently learned about Carly, a young girl with Autism, who’s helping to change the face of her ‘Label’. Anyone looking at her would assume she has nothing to contribute to society. That she can’t think for herself. That she has no intelligence. They would think this because of her label and her outward appearance. They would think this and they would be very wrong!
Carly is very smart. She is very capable and she is finding a way to give society a rare glimpse into the body, feelings and senses of an individual with Autism. She is telling the world that just because she has this LABEL and experiences our world differently than the majority, doesn’t make her wrong. Doesn’t make her value less. In fact I believe it makes her that much more valuable! Just like Amiera.
So who exactly is putting the value on these labels? And, how do we change it?
I sometimes wonder if, in all our intelligence, we’ve missed the point of these wonderful individuals and their labels. I believe, somewhere, there’s a higher presence trying to show us we aren’t the superior beings we believe ourselves to be. We have flaws and if we look at these angels for their value, they can show us a better way to see the world.
So as you all know this blog thing is a new endeavour and I’ve had huge amount of topics that I’ve been trying to “prioritize” in order to decide on what to write next.
And then I started talking to “her”. You know the mom who always has an opinion, who “knows” all the “you should know too” information, the one who’s kids are out of control but who thinks they’re perfect and your child really should learn from them. Ya. “HER“.
Well, this mom, mentioned that she read my first blog post and thought “it’s a great idea”. “I’m sure someone will love hearing your opinions” – with a not so subtle pat on the shoulder and a forced smile to my friend who was standing with us. But then the subject changed ever so slightly so she could offer her “advice” on posting pictures of my kids online. “I hope you’re not going to do that!” was her “question”.
Honestly, it’s been a serious question that has passed though my endless list of things to consider while starting this project, but seeing that I’m a photographer and MOST of my favourite pictures are of my kids I have decided to post some at some point. So I told her that. The conversation went from just that “a conversation” to a full out slap down lecture. She had an opinion on my priorities, my children’s safety and whether my husband knows about my decision because “maybe he needs to be informed”.
You’re going to question my priorities, my children’s well being and the state of my marriage all in a 5 minute conversation?!?! Uh, ya, NO!
But I can be a polite person. I can bite my tongue …to a point.
So I explained the value of introducing our family to “the world”. We want to show that despite all our challenges we are a “typical family”. I can write all the words in the world but people relate to pictures and I want to engage them. Oh, and yes, my husband knows.
And then… as if the first five minutes hadn’t brought me close enough to the edge….
She looked at Amiera (my little ladybug) and said “oh, well I’m sure it would be safe enough to just put HER picture online but I’d still be worried about your other two.”
ARE YOU KIDDING ME!! DID YOU REALLY JUST SAY THAT TO ME?!?
For those of you who don’t know, Amiera is my five year old daughter and when she was born we were told she has Down Syndrome. I am the founder of our local Down Syndrome Support Group ~ Club 21 – Huron County and I work hard to promote awareness about the diagnosis and how these wonderful people impact our world – FOR THE BETTER!
Now, when she said “I’m sure it would be safe for HER picture”, I just about lost it!
Like, she’s safe because “no one would want her?”
Or she’s safe because “she’s not very cute?”
Or maybe because
“YOU’RE A COMPLETE IDIOT & YOU WOULDN’T WANT HER , SO THEREFORE SHE MUST BE SAFE?!?!?”
Ya, these are the people I face. These are the people my daughter faces. These are the people thousands of others have to deal with on a daily basis.
These are the people I want to teach about Down Syndrome.
Funny thing is, as mad and unforgiving I am, if Amiera understood, she would forgive her “ignorance” in a heartbeat.
That’s just how she is. I’m still learning.
PS: If you are “HER” and for some unknown reason you haven’t already figured it out, you’re opinions are not wanted or required. Thank you.