One of the unexpected joys of being a parent is that you always have something to talk about when you are stuck for chit-chat topics in social situations. Usually you will find yourself talking to another parent and conversation flows readily about each other’s kids. The rules of small talk between parents who are strangers strictly dictate that you must, without fail, compare notes on when each other’s child started crawling/walking/clapping/toilet training. If your child is not doing those things at the appropriate time then conversation usually turns to tips/techniques/advice/anecdotes about how to get there.
I can only endure so much of this before I feel obliged to mention that Wade has Down Syndrome and will do things more slowly than a typical child. I also feel obliged to mention it before the poor unsuspecting stranger in front of me really puts their foot in their mouth, I mean, I’d want someone to tell me! I feel ridiculous standing there keeping this highly relevant piece of information to myself but I always hesitate bringing it up because on the one hand, Wade is so much more than his diagnosis and I don’t want him to be defined by it. On the other hand, it’s still a huge part of who he is and a huge part of who I have become as a parent.
Once conversation has turned to Down Syndrome (as it usually does) at some point, someone will inevitably say something like this…
“I knew a Down’s boy once”
“They’re always so happy”
“We had one live in the same street as us”
And right there, I am in a spin over what to do.
Ever since having Wade, I have been learning a lot about Person First Language. This is where you refer to the person first before the disability. For example, Wade is not a “Down’s boy”. He is a boy with Down Syndrome. I remember the first time I learnt about this. It was when I was pregnant and first visited Down Syndrome Victoria to get some information. I was chatting to Sue, the New Parent Manager. I said something about having a “Down’s baby” and she let it slide for a minute or two. Then she dropped it into conversation a little while later about the preferred terminology. It was nice of her not to come down on me like a ton of bricks but I immediately realised she was referring to my earlier comment. I must admit (sorry Sue!), I said to myself, “Here we go, political correctness gone mad. Now I’m going to have watch my words all the time so I don’t upset everyone”. I think I thought that everyone must be incredibly over-sensitive.
It wasn’t until Wade was born that I got it. I hate to admit it but sometimes you can’t fully understand something unless its relevant to you. It’s selfish but I think it’s mostly true. I had been guilty of speaking that way in the past but the first time someone referred to Wade as a “Down’s baby”, all the hair on the back of my neck stood up and I bristled. I felt it immediately.
He’s not a thing, he’s my son!
The whole notion that my son is just bundled up in a generalisation and slapped with overly positive platitudes rankles me. It irks me when I hear people say “He suffers from Down Syndrome”. He’s not suffering, he just has it. He is not always happy…admittedly, he is happy a lot of the time, but he can throw a tantrum just like every other kid. He didn’t choose us as parents and I’m not brave for having him. He is just my son, and I love him more than anything in the world. Just like every other parent. But this is where I get into a tail spin. I want to be an advocate for Wade, an educator about Down Syndrome and a defender for injustice and prejudice but I don’t want to be THAT mother.
I don’t want to be THAT mother who serves up an indignant dressing down to poor unsuspecting people who think they are giving me a compliment but have used the wrong words in the wrong order.
I don’t want to be THAT mother who softly, quietly and condescendingly explains to adults like they’re children about how words can hurt if they’re not used correctly.
I don’t want to be THAT mother who goes quiet and upset and no one knows who said the thing that upset her.
And every time I go to speak up….I feel like one of them.
I imagine that as soon as the words leave my mouth, I will make caring people feel awful for an ill-considered comment, or I will automatically be cast as an over-sensitive politically-correct militant. It is particularly difficult with friends. They knew me before I had Wade. My sense of humour has always toed a pretty fine line of what is acceptable and what isn’t. I have often found gritty, dark and completely un-PC humour hilarious as long as it is clever, in context and works on many levels. If its just a cheap shot to get a laugh or using negative and humiliating stereotypes then I don’t find it funny but I’m sure I have blurred the lines before.
Basically, I don’t want to be a hypocrite. I want to keep my sense of humour and still ensure that people understand how language can affect everything. All of this leads me to the reason why I felt compelled to write this piece. I guess you could call it a passive/aggressive cry for help.
The other day I received a group text from a very close friend of mine. It had a funny photo attached. It was a mock real estate ad for a house and the description was a realistic account of what living in that suburb was like instead of the fake versions you usually get from real estate agents who can make the worst suburb in the world sound like you are living in paradise. It was clever and it was funny but it also had the word “retards” in it.
This is a word, I am ashamed to say, I have used in the past. Only since having Wade have I learned it’s also the most offensive thing you can say to anyone who has an intellectual disability or anyone who loves them.
The word “retarded” is actually a medical term. It literally means slowed or delayed. The problem is that it has been used as a derogatory term so extensively and for so long that there is no way you can hear it without associating it with stupidity and worthlessness. I don’t like having my son associated with stupidity and worthlessness and neither does anybody else. It is the equivalent of the “N” word to African Americans and I don’t want it used any more.
When I received this text, my stomach sank. I tried writing a response but everything I wrote read wrong. I felt like a hypocrite and I felt like one of THOSE mothers. So I am taking the opportunity to put it out there so that no one has to feel uncomfortable or embarrassed in my presence….mainly me….. (Pretty much the definition of passive/aggressive so I guess I’m actually THAT kind of mother)
When you meet a person, any person, think of them as a person first.
The rest is easy.
…..and just because it cracks me up, here’s a few photos of Wade singing!