The “R” Word… Part 2: Actions Speak Louder Than Words

I noticed her right away when we walked into the doctor’s office. She was a lady in white: white shoes, white tights, white skirt, white blouse, white hair and perched on top, a white nurse’s hat – the old fashioned kind I’d only ever seen in skimpy Halloween costumes. She was a piece of history come alive in our G.P.’s waiting room.

She rushed over when she noticed us, and peered into the car seat where baby B was studying her own fingers.

“What a sweet little mongoloid!”

When I finally managed to unhinge my jaw, I’m pretty sure I muttered something about Down Syndrome being the appropriate term. Did I hear her right? About 100 years ago the label “mongoloid idiot” was discarded along with leeches and flat earth theories. Could someone in this day and age actually be using the term?

But she did. Just as people in this day and age still use the term “retardation”. Including my parents and many of my relatives.

Are they ignorant? Clueless? Or even worse…gasp!.. not reading my blog? (The “R” Word Part 1)

Not at all! In fact, there were few things more forbidden growing up than using the word retard as a put down. “There really are retarded people” my Mom would say. And she would never allow us to disrespect them by misusing the term.

• It is not the USE of the word retardation that is offensive, but the MISUSE.

It is actually a clinical term, meaning held back or delayed, hence the diagnosis mental retardation. My Aunt proudly displays a plaque on her wall celebrating her years of service to the Glendale Association for the Retarded. She is proud to have sat on the board of directors and feels no shame in referring to herself as retarded. Nor should she.

• Language evolves over time.

Words are not static in their meaning, but change alongside culture. When my husband was growing up, the ‘D’ word in his house wasn’t the same as in mine. It was ‘dork’. To this day, he dares not call his brother the ‘D’ word in his Mom’s presence (naturally he waits ’till she turns around). She hears something the rest of us don’t. Perhaps it is her training as a marine biologist, but to her ears ‘dork’ clearly says “whale penis.”

Once upon a time, “idiot” and “moron” were appropriate medical terms; now they are names for tail-gaters and obtuse civil servants. They’ve become insults and nothing more.

Clearly, the term retardation is heading in the same direction. It no longer means what it used to, at least outside of a clinical setting. It is too wrapped up in social stigma.

• So, we’ve created new terms.

Intellectual disability, developmental delay, mental handicap, differently-abled, cognitively-challenged, low incidence… Some are good, some are kind of silly, but the whole thing is REALLY confusing. I used to think it was political correctness gone mad. Until it was my kid they were talking about.

Now it seems important to find the right words to express, not who she is, but the struggles she faces. As a community of parents, professionals and self advocates, we need to get together and find a common language. It doesn’t matter so much which one we choose, we just need to get on with it.

• Words are important, but ACTIONS and ATTITUDE are even more important!

Of course I think words are important. I’m a writer, it’s kind of my job. Plus, I totally kick ass at Scrabble.

But when we get bogged down by the nit-picky specifics of word usage, sometimes we miss the point. I’d like for people to use respectful language, but it’s most important that they actually respect my daughter. When push comes to shove, intent trumps nouns, verbs, and adverbs… every time.

That olden times nurse who offended me on our first meeting proceeded to shower B with attention. Each time we came for the next few years, she would drop everything to come and visit with her. She was amazed by her every accomplishment and was always telling B what a “smart, smart girl she is”.

I don’t see her anymore and I miss her. She loved B. She treated her with respect. She may not have said all the right things, but she took the time to get to know my daughter. And that’s what matters most.

So here’s me, differently-abled in many ways myself. I can curl my tongue and fold it over, but I can’t for the life of me wink.

What do you think? Which terms are you most comfortable using? Why?