Grace for Rett » Grace's Life with Rett Syndrome


The majority of my childhood spanned the 90’s. Like many people my age, I grew up making fun of my friends by saying “duuuuuh” while holding a limp wrist to my chest. And I donned the stereotypical American youth saying “you’re such a retard”.

I’ll start this post in all honesty by saying I’m really torn about the “r-word”. I usually laugh when I hear it in movies (like Napoleon Dynamite, a caricature of American youth – not real life), but when Ann Coulter (a real life person) called Obama a retard on Twitter and then totally justified herself on Piers Morgan, I went into a momentary blind rage.

I don’t know why I’m so torn. Why I can call my husband a retard and we laugh (something I only do in private and with an exaggerated American accent) but when I hear someone else say it, it grates on my senses. When I hear people use the word, it makes my hairs stand on end, almost immediately, before I really even process what I’ve heard. It’s instinctive.

Ann Coulter’s infamous Obama Retard tweet

I’ve historically been a pretty judgemental person. A know-it-all. I’ve changed so much since the arrival of my beautiful daughter who has brought so much grace into my life and made me see that you really never know what it’s like to be someone else. You just. Don’t. Know. So along those lines, I never understood how some black people could call each other nigger and say that it was empowerment, a way to take the word back. I judged them as unintelligent, illiterate, uneducated. But now, I totally get what that’s all about. Because while I shudder when I hear someone use the word retard, I privately call my husband one. And when I do, it always feels like…well…like giving the “r-word” the middle finger, ya know? I do secretly think “I can use this word. YOU can’t!”

But on the whole, everything in me knows that “retard” is a slur. Of course like many slurs, it has roots in wholly appropriate language. Retarded is a real thing. Mental retardation happens. And I don’t shy away from this word when it needs to be used. When I asked the geneticist “is my daughter retarded?” she became uneasy at this word which has become politically incorrect. She said “we like to call it developmental delay.”

“Ok” I said. “So she’ll catch up?”


“Ok…so then it’s not delay. It’s retardation.”

She changed the subject and told me that should I get pregnant again, I should have an amnio before 20-something-weeks so I can abort. Hey lady, way to take a mildly politically uncomfortable situation and drop into one of the most emotionally charged political subjects known to man. Hats off to you.

But she was wrong and sorely misinformed. Kids with Rett aren’t retarded. They’re locked-in. If that geneticist happens to be reading this, please…go to a conference or something before you ever talk to another Rett parent again.

Technical lingo aside, this word is now being used against people who are intellectually different from others (aren’t we all?). So it’s now a swear word and this is where I get conflicted. Should I allow ignorant people to determine the words I use? Or use them myself as a way of saying “get lost. YOU won’t dictate the words I will and will not use.”

No matter what conflicts I’m personally battling inside my own head (I over-think things, can ya tell?) one thing is certain. Words hurt. Words like nigger, fag, chink, kike, retard…these words are a way to take away someone’s humanity. To make them a…thing. To marginalise them and say “you belong over there”. When people use words like retard, it’s prideful and superior. It says “I get to choose who and what you are”, placing yourself above others. And to people like me who care for a child with a severe disability, it just makes them look like someone without empathy. Or the ability to acknowledge that you don’t know what it’s like to live in someone else’s shoes. It’s small-minded and highlights a severe case of emotional retardation.

But where does it end? When men and women call each other “hot” are they not also labelling each other? Marginalising, grouping, categorizing people according to their appearance? Why should we get to say where people belong in the order of things?

Asma - March 9, 2013 - 10:50 pm

beautiful post …sometimes when we are unaware of what reality holds for us, its painfully easy t go light on it. until the reality strikes.

this is a word im always afraid to say for people who are sometimes far better than us even with their physical limitations. they are gifted 🙂

muc love to your lil pretty lady 🙂

ella - March 9, 2013 - 11:07 pm

Your only offended when Obama is called it? Obviously YOUR the RETARDED ONE!!! Liberal RETARD 😉

Elizabeth Goodwin - March 9, 2013 - 11:42 pm

I feel the same way. I am also a 90’s kid and grew up saying all those same things. I remember as a teen also being conflicted about the word retarded and still to this day the n word with black people. So glad that you speak up and post you thoughts!

Dot McQueen - March 9, 2013 - 11:55 pm

Great post, Elizabeth. For me personally, this reinforces the need to ‘behave’ all the time with our language and not let that vigilance lapse EVEN for a laugh when in public. One day we might be the victim in that name calling.

And Ella, I think you need to read and absorb the whole post rather than hurl abuse at someone who is saying the word retard is only acceptable when it is used for a technical definition.

Sharon - March 9, 2013 - 11:55 pm

Too bad Ella stopped reading after you mentioned the name Obama. Your post was very enlightening. I too had a child who had a health condition that drew the attention of others. He was diagnosed with a brain tumor when he was 9 years old and passed at 13. The in between years was accompanied with side effects that were noticeable. That sometimes brought hurtful comments. I think being educated by someone who is walking the walk should be commended not condemned. You did not actually say you are crazy about Obama. You said that the name calling was inappropriate. That’s what I got from your comment.

Keep informing others about Retts. You speak with authority, honesty, and love.

Sonia - March 10, 2013 - 12:26 am

Ella – If ‘YOU’RE’ going to offer an opinion, it would help for people take ‘YOUR’ opinion seriously if you actually offered one that is in conjunction with the topic. ‘YOUR’ ignorance is showing.

Grace for Rett - March 10, 2013 - 1:16 am

Thanks for your lovely post Ella. I’m Grace’s Dad and more conservative than most conservatives. I’m not offended at you using spiteful and sad words, I’m more hurt you called my wife a liberal 🙂
Please be nice and civil though, remember this is for my severely disabled daughter, whose brothers have a hard time at school when children say these types of things to them about Grace.

Heather - March 10, 2013 - 3:26 am

I’m the sister of a beautiful, funny, intelligent girl that makes me think that sometimes I’m the one with “special needs”, not her! I’ve struggled SO much with the use of this word – me using it at home (ok?) or my friends using it and then my hair stands on end in rage!! This blog is perfect and fits so well with what’s in my head!! Thank you!
To dear, sweet Ella… you are the “kind of people” that make me think these words will never be dropped from our vocab because of “insert kind of person here” like you.

Scott L Vannatter - March 10, 2013 - 4:30 am

As a teacher, I had to deal with kids calling each other names all the time. I didn’t like it and don’t like it.
All it does is hurt.
Thank you for speaking out in this post.

Michael - March 10, 2013 - 5:19 pm

You posts are always so timely. I’ve been dealing with this lately and recently called somebody out at work for using the ” R word thanks for another great post

Sharon - March 10, 2013 - 8:42 pm

Just following up on the comments

Retarded » Grace for Rett - May 29, 2017 - 4:02 pm

[…] years ago I wrote a post called Retard. Read that one first, I […]

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