Finding the right words

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!

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24 thoughts on “Finding the right words

    • Thanks Chalky! It was really hard to write, for all the reasons I said but especially hard because I don’t like making good people feel bad. You should hear Wade sing, he’s pretty good and has plenty of gusto!

  1. Really great article, it would be great to have this handy and pass it on to the person that unwittingly used all the button pressing language and platitudes. They could then perhaps reflect and find their own way to proceed next time without the onus being on you. I have a nephew of has Down Syndrome, I have worked with children with Down Syndrome there were and still are a lot of language barriers to communicating about it. Thank you for writing this, I am going to be passing it on.

  2. Yes yes yes! I agree to it all! My pet hate is when people say they someone “is a Downs”. Er, that doesn’t even make sense!!!

  3. You are so Awesome, Leticia! so well written!! Wade you have so much spunk and I’ve LOVED watching you grow and look forward to watching you grow into the handsome man you’ll become 🙂 xx

  4. I’m so sorry. I’ve used these words. I’ve used these words in an effort to connect. To show my affection, to show my adoration, to show my love for all humans in the myriad of gorgeous ways we show up and the amazing things we show each other.
    What i really want to say is – i love you and i love your son. If that was ok to say, that’s what i’d go with, but instead i have to use other words, and other words are laden with all sorts of stuff, stuff that i can do my best to be aware of but will never really know. Because you know, we all have different stuff. We all have different things that feel hurtful. One person’s insult is another person’s compliment. It’s a mindfield.
    Anyway. I’m really really sorry. I never meant to hurt anyone.

    • I understand how hard it is and that’s why I wrote the piece. I can never find the right words because I know that people are generally just being nice and it seems unfair to correct or berate them. I guess I just wanted to highlight an aspect of language that isn’t obvious unless it is relevant to you. No one needs to apologise to me. I just want to broaden people’s view if I can.

  5. Hi Leticia – this is such an interesting issue. I think how we use language is so important even though it seems and sometimes feels like its a petty thing to take issue with. I’ve also had people refer to children as ‘Downsies’. A woman came up to me in Highpoint shopping centre to tell me that she had a ‘downsie’ as well, and I totally had the experience you talk about here – how can I correct her when firstly she was talking about her own child and secondly she had just braved bowling up to a complete stranger to try to say something encouraging to me – which she did. The other thing I think about a lot is what we should call ‘the others’ and I’m starting to think that the only thing children without Down syndrome can be called is ‘children without Down syndrome’. My thinking is that anything else – ‘typical’, ‘mainstream’ – is really just a euphemism for ‘normal’. And after reading your blog I’m wondering if the term ‘typical child’ isn’t person first language as well. Yes, I’ve probably taken this too far now, so I’m going to stop. Thanks so much for sharing your interesting personal thoughts!

  6. Hi Leticia, Fantastically written. Yes, I’ve had all of these! And apparently my son was sent to me because I am special! Downsies, Down syndrome kids and all the terminologies make me cringe but I try to let it slide.

    I actually like the word retarded if it’s used properly. Unfortunately it has been used in a derogatory way for so long that people see it as offensive. A tree can be retarded in growth, but it will still grow – it’s just a little slower!

    I’ve noticed in meetings, since I had my boy, that people can’t be bothered to say intellectually disabled so they refer to it as ID. I find that offensive!

    They are only words but words mean so much. I should blog about this as well because, although I let it slide, it is very much an issue for me too.

    Thank you for thought provoking posts that I really identify with. And Wade is just too cute!!

    • Since writing this I’ve had different people giving their different take on what they find offensive and what they don’t. It’s been really interesting. I guess the bottom line is the intention of the comment and respect for the individual. Thanks for the feedback!

  7. Well said Leticia! Totally agree. Most offensive thing I heard was when I mentioned in conversation that my child had Down Syndrome and the response was – oh , I’m sorry. Like it was a curse or he was as good as dying from cancer…. But the person didn’t realize at all that it came across like that to me. He thought he was being empathetic.

  8. Hi. You may or may not recall that I posted a few days ago. We received a prenatal diagnosis on my first son a few months ago. We’re due in late September.

    I also have been known to toe the line in my humor. I’ve also used this word. I think I’ve said it three times since our world changed. Each time it has slipped out by accident. Each time I have spent the next few hours or days loathing myself. For the word, and for my hypocrisy as I now try to leave it behind, now that it matters to me.

    -John

  9. You capture the conversational dilemma very well. In one way it’s an important bit of information, but in so many ways it’s also irrelevant. I think most people mean well though.

    As an example I’ve gotten quite intolerant when it comes to the ‘r’ word. It really bothers me. Mostly people have reacted positively when I call them on it, although I have had those arguments with strangers on Facebook over it. That’s been the exception, though – and even then I think it was worth the argument, particularly when the person I was arguing with reached into his little box of cliches and pulled out all the most tired and shopworn excuses. I’ve also come to feel that if I don’t stick up for my daughter, who will?

  10. Pingback: Happy Birthday little Blog! | Embracing Wade

  11. Pingback: I stood up for my son today and it felt good. | Embracing Wade

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